NIAMS Coalition Members

Reviewed November 28, 2016

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

Professional Organizations
Voluntary Organizations
Other Organizations

Professional Organizations

American Academy of Dermatology

P.O. Box 4014
Schaumberg,  IL 60618-4014
Phone: 847-330-0230
Toll Free: 866-503-7546
Fax: 847-240-1859

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
Phone: 847-823-7186
Fax: 847-823-8125
Website: (con información en español)

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.
Rosemont,  IL 60018
Phone: 847-737-6000
Fax: 847-737-6001

American Association of Colleges of Osteopathic Medicine

This association serves the administration, faculty, and students of the 19 member osteopathic medical schools.

500 New Jersey Avenue NW, Suite 380
Washington,  DC 20001
Phone: 301-968-4100
Fax: 301-968-4101

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
Phone: 507-288-0100
Fax: 507-288-1225

American College of Rheumatology

The American College of Rheumatology (ACR) is an organization of doctors and associated health professionals who specialize in arthritis and related diseases of the bones, joints, and muscles. The Association of Rheumatology Health Professionals, a division of ACR, aims to enhance the knowledge and skills of rheumatology health professionals and to promote their involvement in rheumatology research, education, and quality patient care. The association also works to advance and promote basic and continuing education in rheumatology for health professionals who provide care to people with rheumatic diseases.

2200 Lake Boulevard NE
Atlanta,  GA 30319
Phone: 404-633-3777
Fax: 404-633-1870

American Federation for Medical Research

This organization provides a forum for young clinical scientists. It promotes and encourages original research in clinical and laboratory medicine; offers specialized education programs; and presents annual scientific programs on various aspects of medicine, including immunology and connective tissue, genetics, dermatology, and patient care.

500 Cummings Center, Suite 4550
Beverly,  MA 01915
Phone: 978-927-8330
Fax: 978-524-0498

American Nurses Association

This professional organization represents registered nurses. It has 53 constituent state associations and 13 organizational affiliate members.

8515 Georgia Avenue, Suite 400
Silver Spring,  MD 20910
Phone: 301-628-5000
Toll Free: 800-274-4ANA (4262)
Fax: 301-628-5001

American Orthopaedic Society for Sports Medicine

This is a national association of orthopaedic surgeons who specialize in sports medicine.

9400 W. Higgins Road, Suite 300
Rosemont,  IL 60018
Phone: 847-292-4900

American Osteopathic Association

142 East Ontario Street
Chicago,  IL 60611
Phone: 312-202-8000
Toll Free: 800-621-1773
Fax: 312-202-8200

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
Phone: 703-684-2782
Fax: 703-684-7343
Website: (con información en español)

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. 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
Phone: 202-367-1161
Fax: 202-367-2161

American Society of Gene and Cell Therapy

555 East Wells Street
Milwaukee,  WI 53202-3823
Phone: 414-278-1341

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
Phone: 404-633-3777
Fax: 404-633-1870

Biophysical Society

This is a professional organization of biophysicists, biochemists, and other scientists interested in the application of physical laws and techniques to the analysis of living phenomena.

11400 Rockville Pike, Suite 800
Rockville,  MD 20852
Phone: 240-290-5600
Fax: 240-290-5555

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
Phone: 847-328-2256
Fax: 847-328-0509

Dermatology Nurses Association

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
Toll Free: 800-454-4362
Fax: 910-246-2361

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
Phone: 301-634-7000
Fax: 301-634-7001
Website: (con información en español)

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
Phone: 1-800-875-1378
Fax: 703-684-4083

Health Partners Institute

8170 33rd Ave. South, MS23301A
Bloomington,  MN 55440-1524
Phone: 952 967-5014
Fax: 952 967-5022

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.
Chicago,  IL 60611
Toll Free: 800-289-6266
Fax: 312-673-6941

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
Phone: 214-637-6282
Toll Free: 800-TRY-NATA (800-879-6282)
Fax: 214-637-2206
Website: (con información en español)

Orthopaedic Research and Education Foundation

9400 W. Higgins Road, Suite 215
Rosemont,  IL 60018-4975
Phone: 847-698-9980
Fax: 847-698-7806

Orthopaedic Research Society

This is a society of orthopaedic surgeons and other investigators who are elected as active members on the basis of their previous scientific activity, their continued participation in the field of research, and their accomplishments in orthopaedic surgery. The society promotes orthopaedic research.

9400 West Higgins Road, Suite 225
Rosemont,  IL 60018
Phone: 847-823-5770
Fax: 847-823-5772

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
Phone: 216-579-9300
Fax: 216-579-9333

Society for Pediatric Dermatology

8365 Keystone Crossing, Suite 107
Indianapolis,  IN 46240
Phone: 317-202-0224
Fax: 317-205-9481

Voluntary 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
Phone: 586-776-3900
Toll Free: 800-598-4668
Fax: 586-776-3903
Website: (con información en español)

American Behçet’s Disease Association

P.O. Box 80576
Rochester,  MI 48308
Phone: 631-656-0537
Toll Free: 800-7-BEHCET (723-4238)
Fax: 480-247-5377

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
Phone: 800-533-3231
Fax: 916-652-8190
Website: (con información en español)

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.

4900 Woodway Drive, Suite 780
Houston,  TX 77056-1837
Phone: 713-266-9617
Toll Free: 866-APF-3635 (273-3635)
Fax: 713-840-9552
Website: (con información en español)

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.

6 East 43rd Street, 28th Floor
New York,  NY 10017
Phone: 212-889-4858
Toll Free: 800-499-SKIN
Fax: (212) 889-4959

American Society of Nephrology

1510 H Street NW
Washington,  DC 20005

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
Phone: 608-782-2626
Fax: 608-782-6569

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
Phone: 404-872-7100
Toll Free: 800-283-7800

Arthritis Foundation, Metropolitan Washington Chapter

This is the Washington, D.C. area chapter of the Arthritis Foundation.

1615 L St NW #320
Washington,  DC 20036
Phone: 800-365-3811

Autoinflammatory Alliance

P.O. Box 590354
San Francisco,  CA 94159
Phone: 415-831-8782

Basal Cell Carcinoma Nevus Syndrome Life Support Network

P.O. Box 321
Burton,  OH 44021
Phone: 440-834-0011
Toll Free: 866-834-1895
Fax: 440-834-0132

Churg Strauss Syndrome Association

35 New South St. #211
Northampton,  MA 01060

Cicatricial Alopecia Research Foundation

303 West State Street
Geneva,  IL 60134
Phone: 310-801-3450
Fax: 630-262-1520

Cure CMD

19401 S. Vermont Ave., Suite J100
Torrance,  CA 90502
Phone: 323-250-2399
Fax: 310-684-2023
Website: (con información en español)

Cutaneous Lymphoma Foundation

P.O. Box 374
Birmingham,  MI 48012-0374
Phone: 248-644-9014
Website: (con información en español)

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
Phone: 212-868-1573
Toll Free: 866-332-7276
Fax: 212-868-9296

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
McLean,  VA 22102
Phone: 703-506-2892
Fax: 703-506-3266

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
Phone: 813-325-1955

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
Phone: 781-301-6060
Fax: 781-862-1116

Fibrous Dysplasia Foundation

1380 Monroe St., NW #420
Washington,  DC 20010

Foundation for Ichthyosis and 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
Phone: 215-997-9400
Toll Free: 800-545-3286
Fax: 215-997-9403

Genetic Alliance

4301 Connecticut Avenue, N.W., Suite 404
Washington,  DC 20008
Phone: 202-966-5557
Toll Free: 800-336-GENE (4363)
Fax: 202-966-8553
Website: (con información en español)

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
Phone: 845-348-0400

Gluten Intolerance Group of North America

This organization for people with gluten intolerance (dermatitis herpetiformis) and their family members, physicians, and dieticians works to educate patients, health care personnel, and the public. It offers psychological support to patients and their families and conducts research into the causes of the disorder.

31214 124th Avenue SE
Auburn,  WA 98092-3667
Phone: 253-833-6655
Fax: 253-833-6675

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
Website: (con información en español)

International Foundation for Autoimmune Arthritis

525 Clara Avenue #101
St. Louis,  MO 63112
Phone: 877-609-4226
Fax: 314-769-9163

International Myeloma Foundation

The foundation sponsors research in multiple myeloma.

12650 Riverside Drive, Suite 206
North Hollywood,  CA 91607-3421
Phone: 818-487-7455
Toll Free: 818-487-CURE
Fax: 818-487-7454
Website: (con información en español)

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
Phone: 916-922-1298
Toll Free: 855-473-6744
Fax: 916-922-1458

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
Phone: 315-829-4272
Fax: 315-829-4272

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.

2000 L Street, N.W., Suite 410
Washington,  DC 20036
Phone: 202-349-1155
Toll Free: 800-558-0121
Fax: 202-349-1156

Lupus Foundation of America, Inc., DC/MD/VA Chapter

This chapter provides current information, educational programs, and outreach services to improve the quality of lives for people with lupus while also supporting research.

1319 F Street, NW Suite 305
Washington,  DC 20004
Phone: 202-787-5380
Toll Free: 888-349-1167
Fax: 202-787-5399

Lupus Research Alliance

275 Madison Ave.
New York,  NY 10016-1106
Phone: 212-218-2840
Toll Free: 800-867-1743

Muscular Dystrophy Association

222 S. Riverside Plaza
Chicago,  IL 60606
Toll Free: 800 572-1717
Website: (con información en español)

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
San Rafael,  CA 94903
Phone: 415-472-3780
Fax: 415-480-1800

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
Phone: 314-962-0100
Fax: 314-962-0100

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
Phone: 415-499-3474
Toll Free: 800-818-7546
Fax: 415-472-5345

National Eosinophilia-Myalgia Syndrome Network

15806 Stillwood Ave.
Cleveland,  OH 44111
Phone: 201-868-5791

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

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
Phone: 618-566-2020
Fax: 618-566-4718

National Marfan Foundation

This organization helps people who have Marfan syndrome and related connective tissue disorders.

22 Manhasset Avenue
Port Washington,  NY 11050-2023
Phone: 516-883-8712
Toll Free: 800-8-MARFAN
Fax: 516-883-8040

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
Phone: 203-744-0100
Toll Free: 800-999-6673
Fax: 203-798-2291

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
Phone: (703) 647-3000
Fax: (703) 414-3742

National Psoriasis Foundation

The National Psoriasis Foundation (NPF) is a non-profit, voluntary health agency dedicated to finding a cure for psoriasis and psoriatic arthritis and eliminating their devastating effects through research, advocacy and education.

6600 SW 92nd Ave., Suite 300
Portland,  OR 97223-7195
Phone: 503-244-7404
Toll Free: 800-723-9166
Fax: 503-245-0626

National Scoliosis Foundation

5 Cabot Place
Stoughton,  MA 02072
Phone: 781-341-6333
Toll Free: 800-673-6922
Fax: 781-341-8333

National Vitiligo Foundation, Inc.

The foundation strives to locate, inform, and counsel vitiligo patients and their families; to increase public awareness and concern for the vitiligo patient; to broaden the concern for the patient within the medical community; and to encourage, promote, and fund increased scientific and clinical research on the cause, treatment, and ultimate cure.

11250 Cornell Park Dr.
Cinicinnati,  OH 45242
Phone: 513-793-6834

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
Phone: 301-299-0775
Fax: 301-299-3999
Website: (con información en español)

Nevus Outreach, Inc.

600 SE Delaware Avenue, Suite 200
Bartlesville,  OK 74003
Phone: 918-331-0595
Toll Free: 877-426-3887

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
Phone: 301-947-0083
Toll Free: 800-981-BONE (2663)
Fax: 301-947-0456

Pachyonychia Congenita Project

2386 East Heritage Way Suite B
Salt Lake City,  UT 84109
Phone: 801-401-6300
Toll Free: 877-628-7300
Fax: 877-628-7399

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
Phone: 201-250-8440
Toll Free: 800-714-5437
Fax: 201-250-8435
Website: (con información en español)

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
Phone: 202-362-9599
Fax: 202-966-8553

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
Phone: 203–877–3790
Toll Free: 877-662-7737
Fax: 203-882-8362

SAFE KIDS Worldwide

1301 Pennsylvania Avenue N.W. Suite 1000
Washington,  DC 20004
Phone: 202-662-0600

Scleroderma Foundation

This voluntary organization publishes information 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
Phone: 978-463-5843
Toll Free: 800-722-HOPE (4673)
Fax: 978-463-5809
Website: (con información en español)

Scleroderma Foundation of Greater Washington

The Scleroderma Foundation of Greater Washington is the local Washington, D.C., chapter of the national foundation. It provides educational and emotional support for patients and their families. The foundation seeks to increase awareness of the condition and funds research to determine the cause, enhance treatment, and find a cure.

2010 Corporate Ridge, 7th Floor
McLean,  VA 22102
Phone: 703-938-2191
Website: (con información en español)

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
San Francisco,  CA 94104
Phone: 415-834-9444
Toll Free: 800-441-CURE (2873)
Fax: 415-834-9177

Sjogren's Syndrome Foundation, Inc.

This organization is devoted to Sjogren's syndrome. It publishes free pamphlets and a newsletter for members that provides up-to-date information. It provides clinic and physician referrals.

6707 Democracy Blvd, Suite 325
Bethesda,  MD 20817
Phone: 301-530-4420
Toll Free: 800-475-6473
Fax: 301-530-4415

Society for Women's Health Research

The society promotes a public policy dialogue and serves as a resource for policy makers on women's health issues. It is involved in a wide range of legislative issues that affect women's health and the field of women's health research.

1025 Connecticut Avenue NW, Suite 601
Washington,  DC 20036
Phone: 202-223-8224
Fax: 202-833-3472

Soft Bones, Inc.

121 Hawkins Place, #267
Boonton,  NJ 07005
Phone: 973-453-3093

Spondylitis Association of America

The association is the main voluntary organization devoted to all forms of spondylitis. It publishes materials for patients and for health care professionals.

P.O. Box 5872
Sherman Oaks,  CA 91413
Phone: 818-892-1616
Toll Free: 800-777-8189
Fax: 818-892-1611

Sturge-Weber Foundation

This organization is for people with Sturge-Weber syndrome and their families, concerned professionals, and supporters. It provides information and support to people with Sturge-Weber syndrome.

P.O. Box 418
Mt. Freedom,  NJ 07970-0418
Phone: 973-895-4445
Toll Free: 800-627-5482
Fax: 973-895-4846
Website: (con información en español)

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
Phone: 703-299-4850
Toll Free: 800-821-7356
Fax: 703-535-6752
Website: (con información en español)

The 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
Phone: 212-509-5335
Toll Free: 800-23-PAGET (237-2438)
Fax: 212-509-8492

Tuberous Sclerosis Alliance

801 Roeder Road, Suite 750
Silver Spring,  MD 20910
Phone: 301-562-9890
Toll Free: 800-225-6872
Fax: 301-562-9870

US Pain Foundation, Inc.

670 Newfield Street, Suite B
Middletown,  CT 06457
Phone: 800-910-2462
Fax: 800-929-4062

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
Phone: 816-436-8211
Toll Free: 800–277–9474
Fax: 816-656-3838

VITFriends Vitiligo Support Group Inc

7 Frazer Street
Boston,  MA 02136
Phone: 1-844-374-3639

Vitiligo Bond, Inc.

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
Phone: 404-997-2201

Vitiligo Research Foundation

1, Penn Plaza, 36th floor, office 3606
New York,  NY 10119
Toll Free: 1-855-966-3555
Website: (con información en español)

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
Phone: 434-326-5380
Fax: 434-270-7173

Xeroderma Pigmentosum Society, Inc.

437 Snydertown Road
Craryville,  NY 12521
Phone: 518-851-3466

Other Organizations

Coalition for Imaging and Bioengineering Research

1001 Connecticut Ave NW
Washington,  DC 20036
Phone: 202-347-5872

National Bone Health Alliance

251 18th Street South, Suite 630
Arlington,  VA 22202
Phone: 703-647-3003
Fax: 703-414-3742

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), a part of the National Institutes of Health (NIH), leads the Federal medical research effort in arthritis and musculoskeletal and skin diseases. The NIAMS supports research and research training throughout the United States, as well as on the NIH campus in Bethesda, MD, and disseminates health and research information. The National Institute of Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse is a public service sponsored by the NIAMS that provides health information and information sources. Additional information can be found on the NIAMS Web site at