The Coalition is led by two volunteer co-chairs and governed by a steering committee, which is composed of 12 Coalition members. The co-chairs and steering committee determine Coalition membership eligibility.

For more information on the NIAMS Coalition, contact NIAMS Public Liaison Officer Colleen Dundas.

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.

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

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American Academy of Dermatology

P.O. Box 4014
Schaumberg, IL 60618-4014
United States

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American Academy of Orthopaedic Surgeons

The academy 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.

9400 West Higgins Road
Rosemont, IL 60018
United States

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American Academy of Physical Medicine and Rehabilitation

The academy 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.

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

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American Association of Colleges of Osteopathic Medicine

The American Association of Colleges of Osteopathic Medicine (AACOM) represents the 34 accredited colleges of osteopathic medicine in the United States. These colleges are accredited to deliver instruction at 51 teaching locations in 32 states. In the current academic year, these colleges are educating nearly 29,000 future physicians—more than 20 percent of all U.S. medical students. Six of the colleges are public and 28 are private institutions.

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.

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

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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.

2621 Superior Dr NW
Rochester, MN 55901
United States

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American College of Rheumatology

The American College of Rheumatology (ACR) is an ethically-driven, professional membership organization committed to improving the care of patients with rheumatic disease and advancing the rheumatology subspecialty. Founded in 1934, it is a not-for-profit, global medical society that serves over 9,600 physicians, health professionals, and scientists worldwide.

2200 Lake Boulevard NE
Atlanta, GA 30319
United States

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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.

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

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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.

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

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American Osteopathic Association

142 East Ontario Street
Chicago, IL 60611
United States

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American Physical Therapy Association

The association 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.

1111 North Fairfax Street
Alexandria, VA 22314
United States

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American Society for Bone and Mineral Research

The American Society for Bone and Mineral Research 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; an official journal, the Primer on the Metabolic Bone Diseases and Disorders of Mineral Metabolism; and advocacy and interaction with Government agencies and related societies.

2025 M St., NW, Suite 800
Washington, DC 20036-3309
United States

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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.

555 East Wells Street
Milwaukee, WI 53202-3823
United States

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Association of Rheumatology Health Professionals

This division of the American College of Rheumatology (ACR) is a professional association of nonphysician health care professionals who specialize in rheumatology.

2200 Lake Boulevard, N.E.
Atlanta, GA 30319
United States

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Dermatology Foundation

This organization 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.

 

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

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Dermatology Nurses Association

The Dermatology Nurses’ Association 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.

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

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Federation of American Societies for Experimental Biology

This federation of scientific societies represents 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 American Society for Cell Biology, the Biophysical Society, and the American Association of Anatomists.

9650 Rockville Pike
Bethesda, MD 20814-3998
United States

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Foundation for Physical Therapy

The mission of the Foundation for Physical Therapy is to fund and publicize physical therapy research that determines the scientific basis and value of services intended to optimize physical functioning by physical therapists, and to develop the next generation of researchers.

1111 N. Fairfax Street
Alexandria, VA 22314
United States

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Health Partners Institute

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

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National Association of Orthopaedic Nurses

This is an association of nurses involved or knowledgeable in orthopaedic nursing. It enhances the personal and professional growth of orthopaedic nurses through continuing education programs and promotes research development and advances in orthopaedic nursing.

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

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National Athletic Trainers Association

The National Athletic Trainers’ Association 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.

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.

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

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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 advance musculoskeletal research worldwide.

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

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Rheumatology Research Foundation

We award grants to scientists conducting innovative research that will lead to a future with more options for patients with rheumatic disease to live longer, healthier lives. Our programs fund training and mentorship opportunities for medical students and fellows to assist in the recruitment and education of future rheumatologists. We are committed to expanding the workforce in order to provide patients with better access to specially trained rheumatology professionals.

2200 Lake Boulevard NE
Atlanta, GA 30319
United States

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Society for Investigative Dermatology

This is the professional society promoting research in the skin and skin diseases and related subjects.

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

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Society for Pediatric Dermatology

The mission of the Society for Pediatric Dermatology 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.

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

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Volunteer Organizations

American Autoimmune-Related Diseases Association, Inc.

The American Autoimmune-Related Diseases Association (AARDA) is a nonprofit voluntary health agency dedicated to bringing a national focus and collaborative effort to the more than 100 known autoimmune diseases through education, awareness, research, and patient services. By collaborating with the National Coalition of Autoimmune Patient Groups (NCAPG), AARDA supports legislative advocacy for autoimmune disease patients. AARDA provides free patient education information, physician and agency referrals, forums and symposia, and a quarterly newsletter.

22100 Gratiot Ave.
East Detroit, MI 48021
United States

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American Behçet's Disease Association

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

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American Chronic Pain Association

This voluntary organization's mission is to facilitate 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.

PO Box 850
Rocklin, CA 95677
United States

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American Porphyria Foundation

This is an organization for people interested in advancing awareness and treatment of the many forms of porphyria and people who have porphyria. The foundation provides financial support for researchers. It seeks to improve diagnosis and treatment and to locate people with porphyria.

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

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American Skin Association

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

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

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American Society of Nephrology

The American Society of Nephrology 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.

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

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Antiphospholipid Antibody Syndrome Foundation of America, Inc.

This foundation is dedicated to fostering and facilitating joint efforts in the areas of education, support, research, patient services and public awareness of Antiphospholipid Antibody Syndrome.

Post Office Box 801
La Crosse, WI 54602-0801
United States

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Arthritis Foundation

The Arthritis Foundation is devoted to supporting arthritis research and providing educational and other services to individuals with arthritis. The foundation publishes a free pamphlet on rheumatoid arthritis and a magazine for members on all types of arthritis. It also provides up-to-date information on research and treatment, nutrition, alternative therapies, and self-management strategies. Chapters nationwide offer exercise programs, classes, support groups, physician referral services, and free literature. The foundation also has free information about lupus, scleroderma, and other autoimmune and rheumatic conditions on its Web site.

1355 Peachtree Street, Suite 600
Atlanta, GA 30309
United States

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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.

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

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Basal Cell Carcinoma Nevus Syndrome (BCCNS) Alliance

P.O. Box 1322
Kulpsville, PA 19443
United States

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Churg Strauss Syndrome Association

35 New South St. #211
Northampton, MA 01060
United States

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Cicatricial Alopecia Research Foundation

P.O. Box 1322
Kulpsville, PA 19443
United States

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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.

19401 S. Vermont Ave., Suite J100
Torrance, CA 90502
United States

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Cutaneous Lymphoma Foundation

Providing education, support and services to cutaneous lymphoma patients and families worldwide.

P.O. Box 374
Birmingham, MI 48012-0374
United States

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Dystrophic Epidermolysis Bullosa Research Association of America, Inc.

This association 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.

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

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Ehlers-Danlos National Foundation

The foundation serves people with or interested in Ehlers-Danlos syndrome (EDS) and medical professionals who treat EDS. It aids networking among members for communication and support and maintains a library of educational materials.

7918 Jones Branch Drive
Suite 300
McLean, VA 22102
United States

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Epidermolysis Bullosa Action Network

The goal of this organization is to improve the financial quality and emotional stability of EB families.

16613 Milan De Avila
Tampa, FL 33613
United States

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Facioscapulohumeral Society, Inc.

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.

450 Bedford St.
Lexington, MA 02420
United States

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Fibrous Dysplasia Foundation

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

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Foundation for Ichthyosis & Related Skin Types, Inc.

Members of the foundation are people with ichthyosis and related diseases, dermatologists (doctors 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.

2616 North Broad Street
Colmar, PA 18915
United States

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Genetic Alliance

4301 Connecticut Avenue, N.W., Suite 404
Washington, DC 20008
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.

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

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Gluten Intolerance Group of North America

Non-profit organization which empowers the gluten-free community through consumer support, advocacy, and education. Initiatives include provision of community support through local Branches, provision of extensive educational materials and programs, and certification of gluten-free food products.

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

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Hidradenitis Suppurativa Foundation, Inc.

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.

1301 20th Street, Suite 570
Santa Monica, CA 90404
United States

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International Foundation for Autoimmune Arthritis

525 Clara Avenue #101
St. Louis, MO 63112
United States

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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.

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

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International Pemphigus & Pemphigoid Foundation

The foundation 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.

1331 Garden Highway #100
Sacramento, CA 95833
United States

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Lupus and Allied Diseases Association, Inc

The Lupus and Allied Diseases Association 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.

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

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Lupus Foundation of America

The Lupus Foundation of America is a national nonprofit voluntary health organization dedicated to finding the causes of and cure for lupus; and to providing support, services and hope to all people with this condition. The LFA and its network of nearly 300 chapters and support groups conduct programs of research, education, and advocacy.

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

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Lupus Research Alliance

The Lupus Research Alliance 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.

275 Madison Ave, 10th Floor
New York, NY 10016-1106
United States

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Muscular Dystrophy Association

222 S. Riverside Plaza
Suite 1500
Chicago, IL 60606
United States

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National Alopecia Areata Foundation

Foundation membership includes individuals concerned about or interested in alopecia areata. The foundation seeks to develop public awareness, provide a support network, raise funds for resources, and keep patients informed about the latest treatments.

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

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National Association for Pseudoxanthoma Elasticum

This is an association for people who have pseudoxanthoma elasticum (PXE), as well as others who are interested in the condition. The association provides educational materials.

8760 Manchester Road
St. Louis, MO 63144
United States

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National Eczema Association

The association works to improve the health and quality of life of people with atopic dermatitis/eczema, and educates patients, their families, and their friends.

4460 Redwood Highway, Suite 16-D
San Rafael, CA 94903-1953
United States

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National Eosinophilia-Myalgia Syndrome Network

We are 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 supplements.  We are committed to encouraging research of this little-understood disease with, as of yet, no cure or peer-reviewed medical treatments.

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

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National Fibromyalgia Association

This association is concerned with developing and executing programs dedicated to improving the quality of life for people with fibromyalgia by increasing the awareness of the public, the media, government, and the medical community. It makes the latest research and treatment information available to people with fibromyalgia, and it educates and motivates the medical community to provide faster diagnosis, better treatment, and more extensive research.

1000 Bristol Street N, Suite 17-247
Newport Beach, CA 92660
United States

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National Foundation for Ectodermal Dysplasias

This 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.

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

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National Organization for Rare Disorders

This organization serves as a clearinghouse for information about rare disorders. It monitors the Orphan Drug Act, links individuals for mutual support, encourages research on rare diseases, and encourages faster communication among voluntary organizations, health-related agencies, and government. It also provides information on rare disorders and refers patients to organizations that can assist them.

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

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National Osteoporosis Foundation

The National Osteoporosis Foundation (NOF) is a nonprofit, voluntary health organization dedicated to promoting lifelong bone health in order to reduce the widespread prevalence of osteoporosis and associated fractures, while working to find a cure for the disease through programs of research, education, and advocacy. NOF provides information and resources on osteoporosis for patients and the public. It also provides resources and professional relations and education programs on the disease for health professionals.

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

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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.

6600 SW 92nd Ave., Suite 300
Portland, OR 97223-7195
United States

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National Scoliosis Foundation

5 Cabot Place
Stoughton, MA 02072
United States

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National Vitiligo Bond Inc. Foundation

Vitiligo Bond Inc. is dedicated to funding research into the causes, prevention, treatments and a cure for vitiligo; increasing awareness of vitiligo spectrum disorders; and advocating for the needs of individuals with vitiligo and their families.

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

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National Vulvodynia Association

The association was created to improve the lives of women affected by vulvodynia. It encourages patient self-help, provides a support network, educates the public, encourages research into more effective treatment and eventual cure, and coordinates a central source of information on suspected causes, current treatments, and ongoing research.

PO Box 4491
Silver Spring, MD 20914
United States

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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.

600 SE Delaware Avenue, Suite 200
Bartlesville, OK 74003
United States

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Osteogenesis Imperfecta Foundation

This 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.

804 West Diamond Ave., Suite 210
Gaithersburg, MD 20878
United States

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Pachyonychia Congenita Project

PC Project is fighting for a cure for those suffering with the extremely painful skin disorder, Pachyonychia Congenita. This is accomplished by empowering research and collaboration in the medical and scientific community through its International PC Consortium (IPCC). But most importantly is connecting and helping patients through the IRB-approved International PC Research Registry (IPCRR). The IPCRR is key in understanding PC and advancing research.

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

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Paget Foundation for Paget’s Disease of Bone and Related Disorders

This is an organization for people with Paget's disease of bone and doctors and other health care professionals who are interested in the disorder and in improving patient care. It conducts educational programs for people with Paget's disease of bone, health care professionals, and the public and refers patients to physicians who specialize in treating the disorder.

120 Wall Street, Suite 1602
New York, NY 10005
United States

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Parent Project Muscular Dystrophy

The Parent Project Muscular Dystrophy 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.

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

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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.

4301 Connecticut Avenue NW, Suite 404
Washington, DC 20008-2369
United States

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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.

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

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SAFE KIDS Worldwide

1301 Pennsylvania Avenue N.W. Suite 1000
Washington, DC 20004
United States

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Scleroderma Foundation

This patient advocacy organization provides a wide range of services for patients and caregivers and funds research on scleroderma. It also offers patient education seminars, support groups, doctor referrals, and information hotlines.

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

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Scleroderma Research Foundation

The foundation’s goal is to find a cure for scleroderma by funding and facilitating the most promising, highest quality research and by placing the disease and its need for a cure in the public eye. The foundation distributes patient handbooks and a twice-yearly, research-related newsletter.

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

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Sjogren's Syndrome Foundation, Inc.

The foundation works to educate, raise awareness and encourage research on Sjögren's. It publishes comprehensive patient and professional newsletters, among many other resources, and awards a series of grants for novel and promising research related to the disease. 

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

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Society for Women's Health Research

The society 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.

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

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Soft Bones, Inc.

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.

141 Hawkins Place #267
Boonton, NJ 07005
United States

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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.

16360 Roscoe Blvd., Suite #100
Van Nuys, CA 91406
United States

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Sturge-Weber Foundation

This organization is for people with Sturge-Weber syndrome and/or a Port Wine Birthmark as well as their families, concerned professionals and supporters. It provides information and support and facilitates and funds vital research.

12345 Jones Road, Suite 125
Houston, TX 77070
United States

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The Marfan Foundation

This organization provides education, patient programs and support services, and a comprehensive research program on Marfan syndrome and related connective tissue conditions.

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

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The Myositis Association

The mission of The Myositis Association is to find a cure for inflammatory and other related myopathies, while serving those affected by these diseases.

1737 King Street, Suite 600
Alexandria, VA 22314
United States

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Tuberous Sclerosis Alliance

801 Roeder Road, Suite 750
Silver Spring, MD 20910
United States

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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. 

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

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Vasculitis Foundation

The Vasculitis Foundation (VF) is the only international organization for patients with Vasculitis. Founded in 1986, VF provides patients and family members with practical information and coping strategies to live successfully with Vasculitis.

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

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VITFriends Vitiligo Support Group, Inc.

VITFriends is dedicated to promoting 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, as we seek to work collaboratively with Dermatologists throughout the USA. Key is our advocacy efforts with our first lobby day on October 4, 2017 and our first Congressional Black Caucus visit on September 12, 2018.

7 Frazer Street
Boston, MA 02136
United States

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Vitiligo Research Foundation

1, Penn Plaza, 36th floor, office 3606
New York, NY 10119
United States

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Vitiligo Support International, Inc.

This organization, with more than 30,000 active members, promotes awareness and education about vitiligo, provides information and interaction to people living with vitiligo, and works to encourage and support medical research to find better treatments and a cure for vitiligo.

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

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Xeroderma Pigmentosum Society, Inc.

437 Snydertown Road
Craryville, NY 12521
United States

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Other Organizations

National Bone Health Alliance

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

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Last Reviewed: 03/25/2017