Search NIAMS Coalition Members

Professional Organizations

Academy for Radiology & Biomedical Imaging Research

The Academy for Radiology & Biomedical Imaging Research and its Coalition for Imaging and Bioengineering Research (CIBR) advocates for imaging research at NIH and across the federal agencies and seeks to foster conversation, collaboration, and advocacy opportunities among important stakeholders in the imaging research community: imaging manufacturers, patient advocacy groups, academic departments and imaging societies.

Address

1001 Connecticut Ave NW
Suite 601
Washington, DC 20036
United States

Contact Info

Main: 202-347-5872
Email: mheintz@acadrad.org
Website: acadrad.org

Resources

  • Annual Meeting
  • Social Media
  • Newsletters
  • Patient and/or Provider Resources
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American Academy of Dermatology

The American Academy of Dermatology (AAD) is a non-profit professional organization of dermatologists in the United States and Canada.

Address

P.O. Box 1968
Des Plaines, IL 60017-1968
United States

Contact Info

Main: 847-330-0230
Toll-free: 866-503-7546
Fax: 847-240-1859
Website: aad.org
Información en español

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American Academy of Orthopaedic Surgeons

The American Academy of Orthopaedic Surgeons (AAOS) provides education and practice management services for orthopaedic surgeons and allied health professionals, including those who treat children. It also serves as an advocate for improved patient care and informs the public about the science of orthopaedics. The scope of practice includes disorders of the bones, joints, ligaments, muscles, and tendons. For a single copy of an AAOS brochure, send a self-addressed stamped envelope to the address above or visit its Web site.

Address

9400 West Higgins Road
Rosemont, IL 60018
United States

Contact Info

Main: 847-823-7186
Fax: 847-823-8125
Email: pemr@aaos.org
Website: aaos.org

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American Academy of Physical Medicine and Rehabilitation

The American Academy of Physical Medicine and Rehabilitation (AAPMR) is the national society of physical medicine and rehabilitation physicians, whose patients include people with physical diseases and chronic, disabling conditions. Its mission is to maximize patients' quality of life.

Address

9700 West Bryn Mawr Ave.
Suite 200
Rosemont, IL 60018
United States

Contact Info

Main: 847-737-6000
Fax: 847-737-6001
Email: info@aapmr.org
Website: aapmr.org

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American Association of Colleges of Osteopathic Medicine

The American Association of Colleges of Osteopathic Medicine (AACOM) leads and advocates for the full continuum of osteopathic medical education to improve the health of the public. Founded in 1898 to support and assist the nation's osteopathic medical schools, AACOM represents all 37 accredited colleges of osteopathic medicine—educating nearly 31,000 future physicians, 25 percent of all U.S. medical students—at 58 teaching locations in 33 U.S. states, as well as osteopathic graduate medical education professionals and trainees at U.S. medical centers, hospitals, clinics, and health systems. 

AACOM was founded in 1898 to support and assist the nation's osteopathic medical schools, and to serve as a unifying voice for osteopathic medical education. AACOM’s mission is to promote excellence in osteopathic medical education, in research and in service, and to foster innovation and quality among osteopathic medical colleges to improve the health of the American public.

Address

500 New Jersey Avenue NW, Suite 380
Washington, DC 20001
United States

Contact Info

Main: 202-844-4217
Fax: 202-844-4228
Website: aacom.org

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American Association of Neuromuscular & Electrodiagnostic Medicine

The American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) is a nonprofit membership association dedicated to the advancement of neuromuscular, musculoskeletal, and electrodiagnostic (EDX) medicine. Our mission is to improve the quality of care for patients experiencing abnormal movements, muscle cramps, numbness/tingling, pain, and weakness. Our members are dedicated to diagnosing and managing a variety of nerve and muscle diseases, and we are dedicated to serving them.

Address

2621 Superior Dr NW
Rochester, MN 55901
United States

Contact Info

Main: 507-288-0100
Fax: 507-288-1225
Email: aanem@aanem.org
Website: aanem.org

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American College of Rheumatology

The American College of Rheumatology (ACR) is the premier national professional organization for advancing rheumatology in the United States. The ACR has unparalleled access to rheumatologists nationwide with a membership that consists of over 9,500 rheumatology health professionals, mainly in the U.S., who work to foster excellence in the care of people with, or at risk for rheumatic and musculoskeletal diseases. The mission of the ACR is to empower rheumatology professionals to excel in their specialty.

Address

2200 Lake Boulevard NE
Atlanta, GA 30319
United States

Contact Info

Main: 404-633-3777
Fax: 404-633-1870
Email: acr@rheumatology.org
Website: rheumatology.org

Resources

  • Annual Meeting
  • Diversity Programs
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
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American Federation for Medical Research

Founded in 1940, the AFMR’s mission is to develop and mentor tomorrow’s leaders in medical research. With four regional meetings and participation in two national meetings, this society provides a forum for young clinical scientists to showcase their work and network with more experienced professionals. It offers unique multi-disciplinary interactions and opportunities for leadership.

Address

500 Cummings Center, Suite 4400
Beverly, MA 01915
United States

Contact Info

Main: 978-927-8330
Fax: 978-524-0498
Email: admin@afmr.org
Website: afmr.org

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American Orthopaedic Society for Sports Medicine

The American Orthopaedic Society for Sports Medicine (AOSSM) is the world’s leading advocate for orthopaedic surgeons and health professionals who work to prevent and treat sports injuries among all levels of athletes and active people everywhere. We cultivate evidence-based knowledge, provide extensive educational programming, promote emerging research and engage a community of sports medicine specialists to advance the science and practice of sports medicine.

Address

9400 W. Higgins Road, Suite 300
Rosemont, IL 60018
United States

Contact Info

Main: 847-292-4900
Fax: 847-292-4905
Email: info@aossm.org
Website: sportsmed.org

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American Osteopathic Association

The American Osteopathic Association (AOA) serves as the professional home for more than 168,000 osteopathic physicians and medical students and works to advance the philosophy and practice of osteopathic medicine.

Address

142 East Ontario Street
Chicago, IL 60611
United States

Contact Info

Main: 312-202-8000
Toll-free: 800-621-1773
Fax: 312-202-8200
Website: osteopathic.org

Resources

  • Grants and Funding
  • Newsletters
  • Patient and/or Provider Resources
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American Physical Therapy Association

The American Physical Therapy Association (APTA) is a national professional organization representing physical therapists, allied personnel, and students. Its objectives are to improve research, public understanding, and education in the physical therapies.

Address

3030 Potomac Ave., Suite 100
Alexandria, VA 22305-3085
United States

Contact Info

Main: 703-684-2782
Fax: 703-684-7343
Website: apta.org

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American Society for Bone and Mineral Research

The American Society for Bone and Mineral Research (ASBMR) is a professional scientific and medical society established to bring together clinical and experimental scientists involved in the study of bone and mineral metabolism.

The ASBMR membership comprises basic research scientists, and clinical investigators in bone and mineral metabolism and related fields along with physicians and other healthcare practitioners. Current worldwide membership numbers approximately 4,000 with interests in biomechanics, cell biology, molecular biology, dentistry, developmental biology, endocrinology, epidemiology, internal medicine, metabolism, molecular genetics, nephrology, obstetrics-gynecology, orthopaedics, pathology, pharmacology, physiology, rheumatology and other research/clinical areas.

ASBMR encourages and promotes the study of this expanding field through annual scientific meetings the Journal of Bone and Mineral Research and JBMR Plus; and advocacy and interaction with Government agencies and related societies.

Address

2001 K Street, NW
3rd Floor North
Washington, DC 20006
United States

Contact Info

Main: 202-367-1161
Fax: 202-367-2161
Email: asbmr@asbmr.org
Website: asbmr.org

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American Society of Gene and Cell Therapy

The American Society of Gene & Cell Therapy (ASGCT) is the primary membership organization for scientists, physicians, professionals, and patient advocates involved in gene and cell therapy. Our mission is to advance knowledge, awareness, and education leading to discovery and clinical application of gene and cell therapies to alleviate disease—we do that by serving as a catalyst to transform medicine by advancing gene and cell therapies to benefit patients and society.

Address

20800 Swenson Dr, Ste 300
Waukesha, WI 53186
United States

Contact Info

Main: 414-278-1341
Email: info@asgct.org
Website: asgct.org

Resources

  • Annual Meeting
  • Diversity Programs
  • Grants and Funding
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
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Dermatology Foundation

This Dermatology Foundation (DF) is composed of the members of national and regional dermatological societies and board-certified dermatologists (doctors who specialize in skin diseases). The foundation seeks to control skin diseases through research, education, and better patient care.

Address

1560 Sherman Avenue, Suite 500
Evanston, IL 60201-4808
United States

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Dermatology Nurses' Association

The Dermatology Nurses’ Association (DNA) is a professional nursing organization comprised of a diverse group of individuals committed to quality care through sharing knowledge and expertise. This organization addresses professional issues involving dermatology nurses. It develops high standards of dermatologic nursing care, facilitates communication among members, and conducts educational meetings.

Address

435 N. Bennett Street
Southern Pines, NC 28387
United States

Contact Info

Main: 910-246-2356
Toll-free: 800-454-4362
Fax: 910-246-2361
Email: dna@dnanurse.org
Website: dnanurse.org/

Resources

  • Annual Meeting
  • Diversity Programs
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
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Federation of American Societies for Experimental Biology

The Federation of American Societies for Experimental Biology (FASEB) is an association of scientific societies representing a variety of medical researchers and includes the American Physiological Society, the American Society for Biochemistry and Molecular Biology, the American Society for Pharmacology and Experimental Therapeutics, the American Society for Investigative Pathology, the American Institute of Nutrition, the American Association of Immunologists, the Biophysical Society, and the American Association of Anatomists.

Address

9650 Rockville Pike
Bethesda, MD 20814-3998
United States

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Foundation for Physical Therapy Research

The Foundation for Physical Therapy Research (FPTR) is a national organization dedicated to funding physical therapy research and promising researchers.

Address

1111 N. Fairfax Street
Alexandria, VA 22314
United States

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Health Partners Institute

Health Partners Institute's (HPI) mission is to improve health and well-being through research and education in partnership with our patients, members and community.

Address

8170 33rd Ave. South, MS23301A
Bloomington, MN 55440-1524
United States

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National Association of Orthopaedic Nurses

The National Association of Orthopaedic Nurses (NAON)'s mission is to advance the specialty of orthopaedic nursing in education, research, application of best practices, and to provide professional development and collaboration opportunities.

Address

330 North Wabash Ave.
#2000
Chicago, IL 60611
United States

Contact Info

Toll-free: 800-289-6266
Fax: 312-673-6941
Email: naon@orthonurse.org
Website: orthonurse.org

Resources

  • Annual Meeting
  • Grants and Funding
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
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National Athletic Trainers' Association

The National Athletic Trainers’ Association (NATA) is a professional organization composed of certified and licensed athletic trainers. NATA’s mission and that of its research foundation is to enhance the quality of health care provided by certified athletic trainers and to advance the athletic training profession. Athletic trainers are unique health care providers who specialize in injury prevention, assessment, treatment and rehabilitation of injuries and illnesses. They provide physical medicine and rehabilitation services under the direction of physicians.

Address

1620 Valwood Parkway, Suite 115
Carrollton, TX 75006
United States

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Orthopaedic Research and Education Foundation

The Orthopaedic Research and Education Foundation (OREF) is a charitable 501(c)(3) organization committed to improving lives by supporting excellence in orthopaedic research. OREF is dedicated to being the leader in supporting research that improves function, eliminates pain and restores mobility, and is the premiere orthopaedic organization funding research across all specialties.

Address

9400 W. Higgins Road, Suite 215
Rosemont, IL 60018-4975
United States

Contact Info

Main: 847-698-9980
Fax: 847-698-7806
Email: communications@oref.org
Website: oref.org

Resources

  • Diversity Programs
  • Grants and Funding
  • Newsletters
  • Patient and/or Provider Resources
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Orthopaedic Research Society

As a society, the ORS supports engineers, orthopaedic surgeons, veterinarians, biologists, clinicians and the broader community of those in the field of musculoskeletal science and orthopaedic care.

The goal of the ORS is to accelerate musculoskeletal discovery to improve health.

Address

9400 West Higgins Road
Suite 225
Rosemont, IL 60018
United States

Contact Info

Main: 847-823-5770
Fax: 847-823-5772
Email: ors@ors.org
Website: ors.org

Resources

  • Annual Meeting
  • Diversity Programs
  • Grants and Funding
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
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Rheumatology Research Foundation

The Rheumatology Research Foundation provides funding to recruit the best and brightest into the field, train rheumatology professionals in all career stages and support investigators conducting research that will lead us to more options for people with rheumatic disease. Foundation awards offer support for the rheumatology community in all areas of focus, leading to breakthrough discoveries and cures.

Address

2200 Lake Boulevard NE
Atlanta, GA 30319
United States

Resources

  • Annual Meeting
  • Diversity Programs
  • Grants and Funding
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
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Society for Investigative Dermatology

The Society for Investigative Dermatology (SID) is the professional society promoting research in the skin and skin diseases and related subjects.

Address

526 Superior Ave. East, Suite 340
Cleveland, OH 44114
United States

Contact Info

Main: 216-579-9300
Fax: 216-579-9333
Email: sid@sidnet.org
Website: sidnet.org

Resources

  • Annual Meeting
  • Diversity Programs
  • Grants and Funding
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
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Society for Pediatric Dermatology

The mission of the Society for Pediatric Dermatology (SPD) is to advance the specialty through education and research, to develop new means of treatment, and to provide advocacy in support of pediatric patients with skin, hair and nail disorders.

Address

8365 Keystone Crossing, Suite 107
Indianapolis, IN 46240
United States

Contact Info

Main: 317-202-0224
Fax: 317-205-9481
Email: info@pedsderm.net
Website: pedsderm.net

Resources

  • Annual Meeting
  • Grants and Funding
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
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Voluntary/Patient Advocacy Organizations

American Behçet's Disease Association

The ABDA is a non-profit 501 (c) 3 patient organization. Its mission is to support, educate and empower the Behcet’s community, while continuously advocating for better research, diagnostics, treatments and a cure.

Address

P.O. Box 80576
Rochester Hills, MI 48308
United States

Contact Info

Main: 631-656-0537
Toll-free: 800-7-BEHCET (723-4238)
Fax: 480-247-5377
Email: info@behcets.com
Website: behcets.com

Resources

  • Patient and/or Provider Resources
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American Bone Health

American Bone Health teaches people how to build and keep strong and healthy bones for life with practical and up-to-date information and resources to inspire them to prevent bone loss, osteoporosis and fractures.

Address

4208 Six Forks Rd Suite 1000
Raleigh, NC 27609
United States

Resources

  • Diversity Programs
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
  • Multilingual Resources
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American Chronic Pain Association

The American Chronic Pain Association (ACPA) facilitates peer support and education for individuals with chronic pain and their families so that these individuals may live more fully in spite of their pain; to raise awareness among the health care community, policy makers, and the public at large about issues of living with chronic pain; and to offer support and information for people with chronic pain.

Address

11936 W. 119th Street, Suite 216
Overland Park, KS 66213
United States

Contact Info

Main: 913-991-4740
Email: ACPA@theacpa.org
Website: https://www.theacpa.org/

Resources

  • Diversity Programs
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
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American Porphyria Foundation

This organization is dedicated to the health and well-being of all individuals and families impacted by porphyria. The APF maintains a relentless focus on research, education, awareness, advocacy, and support.

Address

4915 St. Elmo Avenue, Suite 105
Bethesda, MD 20814
United States

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American Skin Association

The American Skin Association (ASA) is an organization dedicated to supporting research on skin diseases. It promotes public education on preventative treatments and the cure of skin disorders.

Address

335 Madison Avenue. 22nd Floor
New York, NY 10017
United States

Contact Info

Main: 212-889-4858
Toll-free: 800-499-SKIN
Email: info@americanskin.org
Website: americanskin.org

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American Society of Nephrology

The American Society of Nephrology (ASN) leads the fight to prevent, treat, and cure kidney diseases throughout the world by educating health professionals and scientists, advancing research and innovation, communicating new knowledge, and advocating for the highest quality care for patients.

Address

1510 H Street NW
Suite 800
Washington, DC 20005
United States

Contact Info

Main: 202-640-4660
Email: policy@asn-online.org
Website: asn-online.org

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APS Foundation of America, Inc.

APS Foundation of America, Inc. (APSFA) is the only United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks. We are a volunteer-run, community-based 501(c)3 non-profit Public Charity organization dedicated to fostering and facilitating joint efforts in the areas of education, support, public awareness, research and patient services.  The APSFA’s Medical Advisory Team includes nationally and internationally recognized experts on Antiphospholipid Syndrome.

Address

624 N 10th St.
STE 4
La Crosse, WI 54601
United States

Contact Info

Main: 608-782-2626
Email: apsfa@apsfa.org
Website: apsfa.org

Resources

  • Diversity Programs
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
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Arthritis Foundation

The Arthritis Foundation (AF) is boldly pursuing a cure for America's #1 cause of disability. We’re championing the fight to conquer arthritis with life-changing science, resources, advocacy and community connections. Online and in person, the Live Yes! Arthritis Community empowers people to connect with others and live their best life. By advancing research, advocacy and disease management support, the Arthritis Foundation helps you navigate the many challenges arthritis brings. You can easily make powerful connections that lead to real, meaningful change. Providing trusted information and numerous ways to connect with others, the Arthritis Foundation is your go-to place for managing arthritis. Get educated, encouraged and empowered—through unique resources, when and where you need us. Help and support are right at your fingertips.

Address

1355 Peachtree Street NE, #600
6th Floor
Atlanta, GA 30309
United States

Resources

  • Annual Meeting
  • Diversity Programs
  • Grants and Funding
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
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Autoimmune Association

The Autoimmune Association is the world’s leading nonprofit organization dedicated to autoimmune advocacy, awareness, education, and research. Its mission is to lead the fight against autoimmune disease by collaborating to improve healthcare, advance research, and support the community through every step of the journey.

Address

19176 Hall Road, Suite 130
Clinton Township, MI 48038
United States

Contact Info

Main: 586-776-3900
Toll-free: 800-598-4668
Fax: 586-776-3903
Email: hello@autoimmune.org
Website: autoimmune.org

Resources

  • Annual Meeting
  • Grants and Funding
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
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Autoinflammatory Alliance

The Autoinflammatory Alliance is a 501 (c)(3) non-profit public charity dedicated to promoting awareness, proper diagnosis and treatment, and improved care for people with autoinflammatory diseases.

Address

P.O. Box 590354
San Francisco, CA 94159
United States

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Bone Health & Osteoporosis Foundation

The Bone Health and Osteoporosis Foundation (BHOF) is the leading, national health organization dedicated to promoting strong bones for life, preventing osteoporosis and broken bones, and reducing human suffering through programs of public and clinician awareness, education, advocacy, and research.

Address

251 18th Street S, Suite 630
Arlington, VA 22202
United States

Resources

  • Annual Meeting
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
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Cure CMD

Cure CMD’s mission is to advance research for treatments and a cure for the Congenital Muscular Dystrophies. We will improve the lives of those living with CMD through engagement and support of our community.

Address

3217 East Carson Street #1014
Lakewood, CA 90712
United States

Resources

  • Annual Meeting
  • Diversity Programs
  • Grants and Funding
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
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Cutaneous Lymphoma Foundation

The vision of the Cutaneous Lymphoma Foundation is a life free of cutaneous lymphoma.  Our goal of eliminating the burden of this group of rare diseases on individuals globally is through: education, raising awareness, personal support, advancing equity in care, and supporting research.

Address

P.O. Box 969
Warren, MI 48090
United States

Resources

  • Annual Meeting
  • Grants and Funding
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
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Dupuytren Research Group

Dupuytren Research Group is a 501(c)(3) patient-directed nonprofit advocating for Dupuytren patients through education and crowdsourced natural history and biomarker discovery research. 

Address

1850 Forest Hill Blvd STE 201
West Palm Beach, FL 33406-6064
United States

Contact Info

Main: 561-429-8279
Fax: 561-828-0494
Email: info@dupuytrens.org
Website: dupuytrens.org

Resources

  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
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Dystrophic Epidermolysis Bullosa Research Association of America, Inc.

The Dystrophic Epidermolysis Bullosa Research Association of America, Inc. (debra) is for people with epidermolysis bullosa and their families, as well as other interested individuals. Its goals are to support research and to relieve the physical and emotional distress of people with epidermolysis bullosa by providing advice, guidance, and support. It distributes educational material to the public and to medical professionals and conducts educational programs.

Address

75 Broad Street #300
New York, NY 10004
United States

Contact Info

Main: 212-868-1573
Toll-free: 866-332-7276
Fax: 212-868-9296
Email: staff@debra.org
Website: debra.org
Información en español

Resources

  • Annual Meeting
  • Newsletters
  • Social Media
  • Patient and/or Provider Resources
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FD/MAS Alliance

A community-led patient advocacy organization serving people with fibrous dysplasia, McCune-Albright syndrome (FD/MAS), and related bone diseases.

Address

2885 Sanford Ave SW #40754
Grandville, MI 49418
United States

Resources

  • Annual Meeting
  • Grants and Funding
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
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Foundation for Ichthyosis & Related Skin Types, Inc.

The mission of the Foundation for Ichthyosis and Related Skin Types, Inc. (FIRST) is to improve lives and seek cures for those affected by ichthyosis and related skin types. Members of the foundation include those affected with ichthyosis and related disorders, dermatologists who specialize in skin diseases, and others, including doctors and health professionals who are interested in the disease. The foundation acts as a support group for people with ichthyosis and their families.

Address

20 Vine Street #1067
Lansdale, PA 19446
United States

Resources

  • Patient and/or Provider Resources
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Foundation for Sarcoidosis Research

The Foundation for Sarcoidosis Research (FSR) is the leading international organization dedicated to finding a cure for sarcoidosis and improving care for sarcoidosis patients through research, education, and support. Since its establishment in 2000, FSR has fostered over $6 million in sarcoidosis-specific research efforts.

Address

1820 W. Webster Ave., Ste 304
Chicago, IL 60614
United States

Resources

  • Annual Meeting
  • Diversity Programs
  • Grants and Funding
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
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FSHD Society

This organization promotes scientific and clinical research on FSH muscular dystrophy (FSHD) through the education of the public, government bodies, and the medical profession. It collects and distributes information on FSHD and its cause and treatment, fosters communication among interested parties worldwide, helps organize support groups for people living with FSHD, and serves as a referral source for health professionals.

Address

75 North Main Street
Suite 1073
Randolph, MA 02368
United States

Contact Info

Main: 781-301-6060
Fax: 781-862-1116
Email: info@fshdsociety.org
Website: fshdsociety.org

Resources

  • Annual Meeting
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
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Genetic Alliance

Address

26400 Woodfield Rd. #89
Damascus, MD 20872
United States

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Global Healthy Living Foundation

The Global Healthy Living Foundation (GHLF) is a 501(c)(3) non-profit organization with the mission to improve the quality of life for people with chronic illness. GHLF advocates for improved access to care at the community level, amplifying education and awareness efforts within its social media framework. Central to this advocacy are GHLF’s successes educating about the importance of diagnosis, early and innovative medical intervention, long-term lifestyle improvement with the goal of improved outcomes.

Address

515 N. Midland Ave.
Upper Nyack, NY 10960
United States

Contact Info

Main: 845-348-0400
Email: info@ghlf.org
Website: ghlf.org

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Global Parents for Eczema Research

Global Parents for Eczema Research (GPER) is an international coalition of parents of children with moderate to severe atopic dermatitis. We engage with researchers and innovators throughout the research process and foster open partnerships  between these stakeholders and families. We do this through four key strategies: influencing research, developing research, engaging in public policy, and sharing research.

Address

1117 State Street
Santa Barbara, CA 93101
United States

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Global Vitiligo Foundation

The mission of the Global Vitiligo Foundation (GVF) is to improve the quality of life for individuals with vitiligo through education, research, clinical care, and community support.

Address

1932 S. Halsted St.
Suite 413
Chicago, IL 60608
United States

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Gluten Intolerance Group of North America

The Gluten Intolerance Group (GIG) is a non-profit organization which empowers the gluten-free community through consumer support, advocacy, and education. Initiatives include community support through local support groups, extensive educational materials and programs, and certification of gluten-free food products.

Address

31214 124th Avenue SE
Auburn, WA 98092-3667
United States

Contact Info

Main: 253-833-6655
Fax: 253-833-6675
Email: admin@gluten.org
Website: gluten.org

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Gorlin Syndrome Alliance

The mission of the Gorlin Syndrome Alliance (GSA) is to thoughtfully support, comprehensively educate, and aggressively seek best the treatments and a cure for those affected by Gorlin syndrome.

Address

PO Box 4
Reading, PA 19607
United States

Contact Info

Main: 267-689-6443
Email: info@gorlinsyndrome.org
Website: gorlinsyndrome.org

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Hidradenitis Suppurativa Foundation, Inc.

The HS Foundation is dedicated to improving the quality of life and quality of care for individuals and families affected by Hidradenitis Suppurativa (HS). Founded for the sole purpose of funding efforts to discover the molecular and cellular causes of HS, to aid in the development and delivery of more effective therapy to patients with this common, debilitating, and eminently chronic disease.

Address

964 High House Road # 3064
Cary, NC 27513
United States

Resources

  • Annual Meeting
  • Grants and Funding
  • Patient and/or Provider Resources
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International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis)

The International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis) helps those, like us, who are affected by autoimmune and autoinflammatory diseases with arthritis as a major early component, use their voices - as equals alongside other stakeholders - to solve problems that impact education, advocacy, and research.

Address

6605 Nottingham Avenue
St. Louis, MO 63109
United States

Contact Info

Main: 877-609-4226
Email: tiffany@AiArthritis.org
Website: aiarthritis.org/

Resources

  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
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International Myeloma Foundation

Founded in 1990, the International Myeloma Foundation (IMF) is the first and largest organization focusing specifically on multiple myeloma. The IMF’s reach extends to more than 525,000 members in 140 countries worldwide. The IMF is dedicated to improving the quality of life of myeloma patients while working toward prevention and a cure through their four founding principles: Research, Education, Support, and Advocacy.

Address

12650 Riverside Drive, Suite 206
North Hollywood, CA 91607-3421
United States

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International Pemphigus & Pemphigoid Foundation

The International Pemphigus & Pemphigoid Foundation (IPPF) provides information to patients, their families, their friends, and the public. It educates the medical community, provides support and counseling to those in need, and helps patients cope with the side effects of drug therapy. It seeks to inform patients and others about the latest research for finding a cure, and it raises funds to promote and support research into the causes and treatment of pemphigus.

Address

915 Highland Pointe Dr, Ste 250
Roseville, CA 95678
United States

Contact Info

Main: 916-922-1298
Toll-free: 855-473-6744
Fax: 916-922-1458
Email: info@pemphigus.org
Website: pemphigus.org

Resources

  • Annual Meeting
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
.

Lupus and Allied Diseases Association, Inc

The Lupus and Allied Diseases Association (LADA) is a passion-driven, all-volunteer organization dedicated to improving quality of life for those impacted by lupus and allied diseases and conditions of unmet need by fostering collaboration among stakeholders and promoting innovative advocacy, awareness and biomedical research program initiatives.

Address

P.O. Box 170
Verona, NY 13478
United States

Contact Info

Main: 315-829-4272
Fax: 315-829-4272
Email: Info@LADAinc.org
Website: ladainc.org

Resources

  • Annual Meeting
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
.

Lupus Foundation of America

The Lupus Foundation of America (LFA) is the national force devoted to solving the mystery of lupus, one of the world's cruelest, most unpredictable and devastating diseases, while giving caring support to those who suffer from its brutal impact. Through a comprehensive program of research, education, and advocacy, we lead the fight to improve the quality of life for all people affected by lupus. Learn more about the Lupus Foundation of America at lupus.org.

Address

2121 K Street, N.W., Suite 200
Washington DC , DC 20037
United States

Contact Info

Main: 202-349-1155
Toll-free: 800-558-0121
Fax: 202-349-1156
Email: info@lupus.org
Website: lupus.org

Resources

  • Annual Meeting
  • Diversity Programs
  • Grants and Funding
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
.

Lupus Research Alliance

The Lupus Research Alliance (LRA) aims to transform treatment while advancing toward a cure by funding the most innovative lupus research in the world. The organization’s stringent peer review grant process fosters diverse scientific talent who are driving discovery toward better diagnostics, improved treatments and ultimately a cure for lupus.  Because the Lupus Research Alliance’s Board of Directors fund all administrative and fundraising costs, 100% of all donations goes to support lupus research programs.

Address

270 Madison Ave., Suite 300
New York, NY 10016
United States

Contact Info

Main: 646-884-6000
Toll-free: (800) 867-1743
Email: info@lupusresearch.org
Website: lupusresearch.org

Resources

  • Annual Meeting
  • Diversity Programs
  • Grants and Funding
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
.

Lymphatic Education & Research Network

The Lymphatic Education & Research Network (LE&RN) is an internationally recognized non-profit organization founded in 1998 to fight lymphatic diseases and lymphedema through education, research and advocacy. Lymphatic diseases include lymphedema (LE), lipedema, and lymphatic anomalies.

Address

154 West 14th Street, 2nd Floor
New York, NY 10011
United States

Resources

  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
.

Muscular Dystrophy Association

The Muscular Dystrophy Association (MDA) is dedicated to finding treatments and cures for muscular dystrophy, ALS, and numerous related muscle-debilitating diseases that take away physical strength and mobility.

Address

161 N. Clark
Suite 3550
Chicago, IL 60601
United States

Resources

  • Annual Meeting
  • Grants and Funding
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
.

National Alopecia Areata Foundation

The National Alopecia Areata Foundation (NAAF) serves the community of people affected by alopecia areata through three primary program areas of support and education, awareness and advocacy, and research.

Address

65 Mitchell Boulevard
Suite 200-B
San Rafael, CA 94903
United States

Contact Info

Main: 415-472-3780
Fax: 415-480-1800
Email: info@naaf.org
Website: naaf.org

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National Eczema Association

The National Eczema Association (NEA) is the driving force for an eczema community fueled by knowledge, strengthened through collective action and propelled by the promise for a better future.

Address

505 San Marin Drive, Suite B300
Novato, CA 94945
United States

Contact Info

Main: 415-499-3474
Toll-free: 800-818-7546
Fax: 415-472-5345
Email: info@nationaleczema.org
Website: nationaleczema.org

Resources

  • Annual Meeting
  • Diversity Programs
  • Grants and Funding
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
.

National Eosinophilia-Myalgia Syndrome Network

The National Eosinophilia-Myalgia Syndrome Network (NEMSN) is a non-profit organization dedicated to helping EMS survivors and their families by offering educational information and peer support.  Our services are available to those sickened by L-tryptophan supplements in the 1989 EMS epidemic and also to those newly sick after taking current L-tryptophan or 5-HTP and/or melatonin supplements.  We are committed to encouraging research of this little-understood disease with, as of yet, no cure or peer-reviewed medical treatments.

Address

P.O. Box 4171
Monitor Station
West New York, NJ 07093
United States

Contact Info

Main: 201-868-5791
Email: NemsnTalk@aol.com
Website: nemsn.org

Resources

  • Annual Meeting
  • Newsletters
  • Social Media
  • Patient and/or Provider Resources
.

National Fibromyalgia Association

The National Fibromyalgia Association (NFA) is a 501(c) 3 nonprofit organization whose mission is to develop and execute programs dedicated to improving the quality of life for people with fibromyalgia. It is committed to implementing efforts to increase fibromyalgia awareness, improve treatment options, facilitate new research, and to develop and implement programs that will continue to provide hope for a better future for people affected by fibromyalgia.

Address

3857 Birch St. Suite 312
Newport Beach, CA 92660
United States

Contact Info

Email: nfa@fmaware.org
Website: fmaware.org

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National Foundation for Ectodermal Dysplasias

The National Foundation for Ectodermal Dysplasias (NFED) is an association of people with ectodermal dysplasias and the medical community. It educates health care professionals in patient treatment, locates treatment facilities, and provides referral information. The mission is to empower and connect people touched by ectodermal dysplasias through education, support and research.

Address

6 Executive Drive, Suite 2
Fairview Heights, IL 62208
United States

Contact Info

Main: 618-566-2020
Fax: 618-566-4718
Email: info@nfed.org
Website: nfed.org

Resources

  • Annual Meeting
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
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National Organization for Rare Disorders

NORD (National Organization for Rare Disorders), a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

This organization serves as a clearinghouse for information about rare disorders. It monitors the Orphan Drug Act and other policies that impact rare disease patients, connects individuals for mutual support, funds research and hosts a natural history study platform, provides programmatic services and support to rare disease organizations, health-related agencies, and government. It also runs educational programs for individuals, families,  students, health professionals, and organizations.  

Address

55 Kenosia Avenue, P.O. Box 1968
Danbury, CT 06810
United States

Contact Info

Main: 203-744-0100
Toll-free: 800-999-6673
Fax: 203-798-2291
Email: orphan@rarediseases.org
Website: rarediseases.org

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National Psoriasis Foundation

The National Psoriasis Foundation (NPF) is a non-profit organization with a mission to drive efforts to cure psoriatic disease and improve the lives of those affected.

Address

1800 Diagonal Rd
Suite 360
Alexandria, VA 22314
United States

Resources

  • Annual Meeting
  • Diversity Programs
  • Grants and Funding
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
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National Scleroderma Foundation

The National Scleroderma Foundation’s mission is to advance medical research, promote disease awareness, and provide support and education to people with scleroderma, their families and support networks. Our vision is to be a relentless force in finding a cure and improving the lives of people affected by scleroderma. The National Scleroderma Foundation provides a wide range of services for patients and caregivers. We offer patient education seminars (adult and pediatric), support groups, physician referrals, information hotlines, and raise awareness through state and federal advocacy efforts. The National Scleroderma Foundation educates clinicians on the disease through global webinars and encourages researchers to apply for grants to improve clinical trial design and expand clinical knowledge.

Address

300 Rosewood Drive, Suite 105
Danvers, MA 01923
United States

Contact Info

Main: 978-463-5843
Toll-free: 800-722-HOPE (4673)
Fax: 978-777-1313
Email: sfinfo@scleroderma.org
Website: scleroderma.org

Resources

  • Annual Meeting
  • Diversity Programs
  • Grants and Funding
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
.

National Scoliosis Foundation

The National Scoliosis Foundation's (NSF) singular focus is to improve as much as possible the lives of people with scoliosis. Four main emphasis areas are advocacy, raising awareness, providing patient support and resources, and fostering collaboration and communication among the scientific, medical, healthcare and patient communities.

Address

5 Cabot Place
Stoughton, MA 02072
United States

Contact Info

Main: 781-341-6333
Email: nsf@scoliosis.org
Website: scoliosis.org

Resources

  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
.

National Spine Health Foundation

The National Spine Health Foundation is a nonprofit organization dedicated to improving spine and neck health care through education, research, and patient advocacy. We are committed to improving patients’ lives through knowledge and hope. Our Foundation educates Americans about the treatment and prevention of neck and back disorders. We prove what works, drive innovation, and support patients on their journey to spine health. We also support policies and initiatives that focus on helping patients.

Address

11800 Sunrise Valley Drive, Suite 620
Reston, VA 20191
United States

Contact Info

Main: 703-766-5405
Email: info@spinehealth.org
Website: spinehealth.org

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National Vitiligo Bond Inc. Foundation

The National Vitiligo Bond, Inc., Foundation (NVBIF) implements grassroots strategies and resources for coping and complementary and supportive therapies for people living with vitiligo. Through our comprehensive social awareness program we are committed to advocacy, education, empowerment, support, and research. Our goal is to improve the quality of life for youth and adult affected by vitiligo. Our philosophy is a commitment to provide knowledge and invest time with vitiligans and their families, which could benefit future generations of people who will become affected by vitiligo, address, and transform their life experience.

Address

P.O. Box 1541
Red Oak, GA 30272
United States

Contact Info

Main: 404-997-2201
Email: support@vitiligobond.org
Website: vitiligobond.org

Resources

  • Diversity Programs
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
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Nevus Outreach, Inc.

Nevus Outreach is dedicated to bringing awareness, providing support, and finding cures for people affected by congenital melanocytic nevi and related disorders.

Address

361 Southwest Drive # 353
Jonesboro, AR 72404
United States

Contact Info

Main: 918-331-0595
Website: nevus.org

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Osteogenesis Imperfecta Foundation

The Osteogenesis Imperfecta Foundation (OIF) is an organization of health professionals, people with osteogenesis imperfecta (OI), and parents of children with OI. It supports and encourages medical research into effective treatment of the disorder and seeks to educate people with OI, their families, and health care professionals.

Address

656 Quince Orchard Rd Suite 650
Gaithersburg, MD 20019
United States

Contact Info

Main: 301-947-0083
Toll-free: 800-981-BONE (2663)
Fax: 301-947-0456
Email: bonelink@oif.org
Website: oif.org

Resources

  • Annual Meeting
  • Diversity Programs
  • Grants and Funding
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
.

Pachyonychia Congenita Project

PC Project is dedicated to finding effective treatments and a cure for Pachyonychia Congenita, a painful, debilitating skin disorder, through helping and connecting patients, empowering research, and partnering with industry. PC Project facilitates research and collaboration in the medical and scientific community through the International PC Consortium (IPCC) and helps patients get a diagnosis and support through the WIRB-approved International PC Research Registry (IPCRR).

Address

2350 Arbor Lane #850
PO Box 17850
Holladay, UT 84117
United States

Contact Info

Main: 801-987-8758
Email: info@pachyonychia.org
Website: pachyonychia.org

Resources

  • Annual Meeting
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
.

Parent Project Muscular Dystrophy

The Parent Project Muscular Dystrophy (PPMD) mobilizes people in the United States and worldwide in a collaborative effort to enable people with Duchenne and Becker Muscular Dystrophy to survive, thrive and fully participate within their families and communities into adulthood and beyond.

Address

401 Hackensack Avenue, 9th Floor
Hackensack, NJ 07601
United States

Contact Info

Main: 201-250-8440
Toll-free: 800-714-5437
Fax: 201-250-8435
Email: info@parentprojectmd.org
Website: parentprojectmd.org

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Pediatric Dermatology Research Alliance (PeDRA)

The Pediatric Dermatology Research Alliance (PeDRA) is an independent 501(c)(3) nonprofit organization driven by the mission to create, inspire, and sustain research to prevent, treat, and cure childhood skin disease.

Address

205 SE Spokane St. #300
Portland, OR 97202
United States

Contact Info

Main: 791-369-4690
Email: info@pedraresearch.org
Website: pedraresearch.org

Resources

  • Annual Meeting
  • Diversity Programs
  • Grants and Funding
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
.

PXE International

This organization for people with pseudoxanthoma elasticum (PXE) fosters support groups, encourages research, provides physician referrals, and publishes a newsletter and educational materials. Its goal is to support patients, provide resources for clinicians, and encourage research.

Address

26400 Woodfield Road #189
Damascus, MD 20872
United States

Contact Info

Main: 202-362-9599
Email: info@pxe.org
Website: pxe.org

Resources

  • Annual Meeting
  • Grants and Funding
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
.

Reflex Sympathetic Dystrophy Syndrome Association

This is an association for people with reflex sympathetic dystrophy syndrome (RSDS) and health care professionals who treat RSDS patients. It educates the public and the media and provides physician referrals.

Address

99 Cherry St., P.O. Box 502
Milford, CT 06460
United States

Contact Info

Main: 203–877–3790
Toll-free: 877-662-7737
Fax: 203-882-8362
Email: info@rsds.org
Website: rsds.org

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Scarring Alopecia Foundation

The mission of the Scarring Alopecia Foundation (SAF), formerly known as CARF, is to provide education and patient support, raise public awareness, and to advance and promote research.

Address

1586 Sumneytown Pike
Box 1322
Kulpsville, PA 19443
United States

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Scleroderma Research Foundation

The Scleroderma Research Foundation's (SRF) mission is to fund and facilitate the most promising, highest quality research aimed at improved treatments and, ultimately, a cure for scleroderma. We focus on long-term fundamental discoveries in basic, translational, and clinical research. Every day, we seek to deepen knowledge and understanding of this life-threatening disease by supporting collaboration among the world’s top scientists and medical institutions, bringing us closer to our goal of a world without scleroderma.

Address

220 Montgomery Street
Suite 434
San Francisco, CA 94104
United States

Contact Info

Main: 415-834-9444
Toll-free: 800-441-CURE (2873)
Fax: 415-834-9177
Email: info@sclerodermaresearch.org
Website: srfcure.org

Resources

  • Annual Meeting
  • Diversity Programs
  • Grants and Funding
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
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Sjögren's Foundation

The Sjögren's Foundation mission is to support Sjogren's patients and their loved ones through education, resources and services; to provide credible resources and education for healthcare professionals; to serve as the voice for all Sjogren's patients through advocacy and awareness initiatives; to lead, encourage and fund innovative research projects to better understand, diagnose and treat Sjogren's; to educate, raise awareness and encourage research on Sjögren's. We publish comprehensive patient and professional newsletters, among many other resources, and award a series of grants for novel and promising research related to the disease. 

Address

10701 Parkridge Blvd., Suite 170
Reston, VA 20191
United States

Contact Info

Main: 301-530-4420
Toll-free: 800-475-6473
Fax: 301-530-4415
Email: info@sjogrens.org
Website: sjogrens.org

Resources

  • Annual Meeting
  • Grants and Funding
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
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Society for Women's Health Research

The Society for Women's Health Research (SWHR) is dedicated to promoting sex differences research and improving women’s health through science, policy, and education. SWHR is involved in a wide range of policy issues that affect women's health and serves as a resource for policymakers on women’s health.

Address

1025 Connecticut Avenue NW, Suite 1104
Washington, DC 20036
United States

Contact Info

Main: 202-223-8224
Fax: 202-833-3472
Email: communications@swhr.org
Website: swhr.org

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Soft Bones Inc., The US Hypophosphatasia Foundation

Soft Bones is a community of healthcare professionals (clinicians and researchers) and people and families living with hypophosphatasia (HPP). Through education, awareness and advocacy, we are working to connect, empower and educate the HPP community to provide support and further research and treatment of the disease.

Address

141 Hawkins Place #267
Boonton, NJ 07005
United States

Contact Info

Main: 973-453-3093
Toll-free: 866-827-9937
Email: info@softbones.org
Website: softbones.org

Resources

  • Annual Meeting
  • Grants and Funding
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
.

Spondylitis Association of America

Spondylitis Association of America (SAA) is the only nonprofit organization in the US dedicating 100% of its resources to improving the lives of the spondylitis community. SAA focuses on funding and promoting medical research, advancing education, providing extensive supportive programs and aggressively advocating on behalf of all those affected by spondylitis.

Address

16430 Ventura Blvd. Suite 300
Encino, CA 91436
United States

Contact Info

Main: 818-892-1616
Toll-free: 800-777-8189
Fax: 818-892-1611
Email: info@spondylitis.org
Website: spondylitis.org

Resources

  • Annual Meeting
  • Diversity Programs
  • Grants and Funding
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
.

The Marfan Foundation

The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes.

Address

22 Manhasset Avenue
Port Washington, NY 11050-2023
United States

Resources

  • Annual Meeting
  • Grants and Funding
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
.

The Myositis Association

The Myositis Association’s (TMA) mission is to increase support, awareness and funding for the myositis patient, caregiver and research community. 

Address

2000 Duke Street, Suite 300
Alexandria, VA 22314
United States

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The Sturge-Weber Foundation

The Sturge-Weber Foundation (The SWF) is for people with Sturge-Weber syndrome and Port Wine Birthmarks and their families, concerned professionals, and supporters. It provides information and support to people with Sturge-Weber syndrome and Port Wine Birthmarks. 

Address

6105 South Main Street
Ste 200
Aurora, CO 80016
United States

Resources

  • Annual Meeting
  • Grants and Funding
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
.

TSC Alliance

The TSC Alliance is an internationally recognized nonprofit that does everything it takes to improve the lives of people with TSC. We drive research, improve quality care and access, fund and drive research, and raise the visibility of the disorder. In advocating for all affected by the disease, the TSC community is our strongest ally. The collaboration of individuals and families, along with the partnership of other organizations, fuels our work to ensure people navigating TSC have support—and hope—every step of the way.

 

 

Address

8737 Colesville Road, Suite 400
Silver Spring, MD 20910
United States

Contact Info

Main: 301-562-9890
Toll-free: 800-225-6872
Fax: 301-562-9870
Email: info@tscalliance.org
Website: tscalliance.org

Resources

  • Annual Meeting
  • Diversity Programs
  • Grants and Funding
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
.

U.S. Bone and Joint Initiative

The United States Bone and Joint Initiative (USBJI) is the U.S. National Action Network of the Global Alliance of Musculoskeletal Health, a multi-disciplinary initiative targeting the care of people with musculoskeletal conditions— bone and joint disorders. Its focus is on improving your quality of life as well as advancing the understanding and treatment of those conditions through research, prevention and education.

Address

9400 West Higgins Road, Suite 500
Rosemont, IL 60018
United States

Contact Info

Main: 847-430-5054
Email: usbji@usbji.org
Website: usbji.org

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US Pain Foundation, Inc.

U.S. Pain Foundation is a 501(c)(3) dedicated to serving those who live with pain conditions and their care providers. The mission of the organization is to empower, educate, connect, and advocate for people living with chronic conditions that cause pain. 

Address

670 Newfield Street, Suite B
Middletown, CT 06457
United States

Contact Info

Toll-free: 1-800-910-2462
Fax: 1-800-929-4062
Email: info@uspainfoundation.org
Website: uspainfoundation.org

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Vasculitis Foundation

The Vasculitis Foundation (VF) is the leading organization in the world dedicated to diagnosing, treating and curing all forms of vasculitis. We support, inspire, and empower individuals with vasculitis and their families through a wide range of education, research, clinical and awareness initiatives.

Address

P.O. Box 28660
Kansas City, MO 64188-8660
United States

Resources

  • Annual Meeting
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
.

VITFriends Vitiligo Support Group, Inc.

VITFriends is dedicated to raising awareness and educating the masses, as we provide information and support to people living with the autoimmune disease known as Vitiligo for which there is still NO known cure.

We support medical research and funding for the work of support groups, as we work collaboratively with dermatologists across the nation. Key is our advocacy efforts, with our first Vitiligo RALLY on the U. S. Capitol Steps in June 2016; our Vitiligo Lobby Day in D.C. on October 4, 2017 and our first Congressional Black Caucus attendance on September 12, 2018.

Address

P. O. Box 366073
7 Frazer Street
Boston, MA 02136-3705
United States

Contact Info

Main: 1-844-374-3639
Website: vitfriends.org

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Vitiligo Research Foundation

Firmly committed to curing vitiligo, the VR Foundation is a 501(c)3 non-profit organization funding and fast-tracking medical research globally. Our mission is to accelerate the end of suffering for millions of people who suffer from vitiligo through research, support and education.

Address

1, Penn Plaza, #6205
New York, NY 10119
United States

Contact Info

Toll-free: 1-855-966-3555
Email: info@vrfoundation.org
Website: VRFoundation.org

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Vitiligo Support International, Inc.

Vitiligo Support International (VSI) is a patient-driven, 501 (c)(3) nonprofit organization committed to supporting those affected by vitiligo, raising awareness, promoting research, and discussing effective treatments until a cure is found.

Address

P.O. Box 3565
Lynchburg, VA 24503
United States

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Xeroderma Pigmentosum Society, Inc.

XPS is an international organization that offers support and information to patients with xeroderma pigmentosa and their families. This inherited disorder, characterized by extreme sensitivity to the sun's ultraviolet rays, mainly affects the eyes and parts of the skin exposed directly to the sun.

Address

437 Snydertown Road
Craryville, NY 12521
United States

Contact Info

Main: 518-851-3466
Email: xps@xps.org
Website: xps.org

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Other Organizations

Osteoarthritis Action Alliance

The Osteoarthritis Action Alliance (OAAA) is a coalition of member organizations committed to elevating osteoarthritis (OA) as a national health priority and promoting effective policy solutions that address the individual and national toll of OA. As a leader in this public health effort, the OAAA promotes evidence-based interventions and the establishment of supportive policies, communication initiatives, and strategic alliances for OA prevention and management. The OA Action Alliance also works to ensure people with OA have the access, skills, and capacity to benefit from effective and proven interventions. 

Address

Thurston Arthritis Research Center
3300 Thurston Building, CB 7280
Chapel Hill, NC 27599-7280
United States

Contact Info

Main: 919-966-7209
Email: oaaction@unc.edu
Website: oaaction.unc.edu

Resources

  • Annual Meeting
  • Diversity Programs
  • Grants and Funding
  • Multilingual Resources
  • Newsletters
  • Patient and/or Provider Resources
  • Social Media
.
Last Updated: September 2022