Outside Organizations

Reviewed August 20, 2012

This page lists the NIAMS Coalition Members. The Coalition is a group of professional and voluntary organizations concerned with the programs of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS).

Professional Organizations
Voluntary Organizations

Professional Organizations

American Academy of Dermatology (AAD)

P.O. Box 4014
Schaumberg,  IL 60618-4014
Fax: 847-240-1859
Website: http://www.aad.org

American Academy of Orthopaedic Surgeons (AAOS)

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 orthopaedist’s scope of practice includes disorders of the body’s 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.

6300 North River Road
Rosemont,  IL 60018
Website: http://www.aaos.org

American Academy of Physical Medicine and Rehabilitation (AAPMR)

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 Avenue, Suite 200
Rosemont,  IL 60018-5701
Phone: 847-737-6000
Fax: 847-737-6001
Email: info@aapmr.org
Website: http://www.aapmr.org/

American Association of Colleges of Osteopathic Medicine (AACOM)

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

5550 Friendship Boulevard, Suite 310
Chevy Chase,  MD 20815-7231
Phone: 301-968-4100
Fax: 301-968-4101
Website: http://www.aacom.org/

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
Website: http://www.rheumatology.org

American Federation For Medical Research (AFMR)

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.

900 Cummings Center, Suite 221-U
Beverly,  MA 01915
Phone: 978-927-8330
Fax: 978-524-8890
Email: admin@afmr.org
Website: http://www.afmr.org

American Nurses Association (ANA)

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
Website: http://www.ana.org

American Orthopaedic Society for Sports Medicine (AOSSM)

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

6300 N. River Road, Suite 500
Rosemont,  IL 60018
Phone: 847-292-4900
Email: aossm@aossm.org
Website: http://www.sportsmed.org

American Society for Bone and Mineral Research (ASBMR)

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
Email: asbmr@asbmr.org
Website: http://www.asbmr.org

Association of Rheumatology Health Professionals (ARHP)

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
Email: arhp@rheumatology.org
Website: http://www.rheumatology.org

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
Email: society@biophysics.org
Website: http://www.biophysics.org

Dermatology Nurses Association (DNA)

This organization addresses professional issues involving dermatology nurses. It develops high standards of dermatologic nursing care, facilitates communication among members, and conducts educational meetings.

15000 Commerce Parkway, Suite C
Mt. Laurel,  NJ 08054
Toll Free: 800-454-4DNA
Email: dna@dnanurse.org
Website: http://www.dnanurse.org

Federation of American Societies for Experimental Biology (FASEB)

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: http://www.faseb.org

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.

401 North Michigan Avenue, Suite 2200
Chicago,  IL 60611
Toll Free: 800-289-NAON (6266)
Fax: 312-673-6941
Email: naon@smithbucklin.com
Website: http://www.orthonurse.org

National Athletic Trainers Association (NATA)

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.

2952 Stemmons Freeway, #200
Dallas,  TX 75247
Phone: 214-637-6282
Toll Free: 800-TRY-NATA (800-879-6282)
Fax: 214-637-2206
Website: http://www.nata.org

Orthopaedic Research Society (ORS)

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.

6300 North River Road, Suite 602
Rosemont,  IL 60018-4237
Phone: 847-823-5770
Fax: 847-823-5772
Email: ors@ors.org
Website: http://www.ors.org

Society for Investigative Dermatology (SID)

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

526 Superior Ave. East, Suite 540
Cleveland,  OH 44114-1999
Phone: 216-579-9300 x305
Fax: 216-579-9333
Email: minnillo@sidnet.org
Website: http://www.sidnet.org

Voluntary Organizations

American Autoimmune-Related Diseases Association, Inc. (AARDA)

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
Email: aarda@aarda.org
Website: http://www.aarda.org

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: 916-632-3208
Email: ACPA@pacbell.net
Website: http://www.theacpa.org

American Porphyria Foundation (APF)

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: http://www.porphyriafoundation.com/

American Skin Association (ASA)

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.

346 Park Avenue S., 4th floor
New York,  NY 10010
Phone: 212-889-4858
Toll Free: 800-499-SKIN
Website: http://www.americanskin.org

Antiphospholipid Antibody Syndrome (APS) 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
Email: apsfa@apsfa.org
Website: http://www.apsfa.org

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.

P.O. Box 7669
Atlanta,  GA 30357
Phone: 404-872-7100
Toll Free: 800-283-7800
Website: http://www.arthritis.org

Arthritis Foundation/Metropolitan Washington Chapter

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

2011 Pennsylvania Avenue, N.W., 6th Floor
Washington,  DC 20006
Toll Free: 800-365-3811
Fax: 202-537-6859
Email: ahipsley@arthritis.org
Website: http://www.arthritis.org/chapters/metropolitan-washington/

Basal Cell Carcinoma Nevus Syndrome Life Support Network

P.O. Box 321
Burton,  OH 44021
Phone: 440-635-0078
Toll Free: 866-834-1895
Email: info@bccns.org
Website: http://www.bccns.org

Cicatricial Alopecia Research Foundation

9300 Wilshire Blvd, Suite 410
Beverly Hills,  CA 90212
Phone: 310-285-0525
Fax: 310-285-0368
Email: carol@carfintl.org
Website: http://www.carfintl.org

Cutaneous Lymphoma Foundation

P.O. Box 374
Birmingham,  MI 48012-0374
Phone: 248-644-9014
Email: info@clfoundation.org
Website: http://www.clfoundation.org

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 870
Evanston,  IL 60201-4808
Phone: 847-328-2256
Fax: 847-328-0509
Email: dfgen@dermatologyfoundation.org
Website: http://www.dermfnd.org

Dystrophic Epidermolysis Bullosa Research Association of America, Inc. (DebRA)

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.

16 East 41st Street, 3rd Floor
New York,  NY 10017
Website: http://www.debra.org

Ehlers-Danlos National Foundation (EDNF)

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.

1760 Old Meadow Road, Suite 500
McLean,  VA 22102
Phone: 703-506-2892
Email: ednfstaff@ednf.org
Website: http://www.ednf.org/

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
Email: silvia@ebanusa.org
Website: http://www.ebanusa.org

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.

64 Grove Street
Watertown,  MA  02472
Phone: 617-658-7878/781-275-7781
Fax: 617-658-7879/781-275-7789
Email: info@fshsociety.org
Website: http://www.fshsociety.org

Foundation for Ichthyosis and Related Skin Types, Inc. (FIRST)

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
Email: info@firstskinfoundation.org
Website: http://www.firstskinfoundation.org

Gluten Intolerance Group (Gig) 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
Email: admin@gluten.net
Website: http://www.gluten.net

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.

P.O. Box 861
Valley Center,  CA 92082
Email: info@hs-foundation.org
Website: http://www.hs-foundation.org

International Bone and Mineral Society

2025 M Street, N.W., Suite 800
Washington,  DC 20036-3309
Phone: 202-367-1121
Fax: 202-367-2121
Email: info@ibmsonline.org
Website: http://www.ibmsonline.org

International Myeloma Foundation (IMF)

The foundation sponsors research in multiple myeloma.

12650 Riverside Drive, Suite 206
North Hollywood,  CA 91607-3421
Toll Free: 800-452-2873
Fax: 818-487-7454
Email: TheIMP@myeloma.org
Website: http://www.myeloma.org

Lupus Foundation of America (LFA)

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
Website: http://www.lupus.org

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.

2000 L Street, N.W., Suite 415
Washington,  DC 20036
Phone: 202-349-1167
Toll Free: 888-349-1167
Fax: 202-223-1970
Email: info@lupusdmv.org
Website: http://www.lupus.org

Lyme Disease Foundation (LDF)

The foundation seeks to educate medical professionals and the public about Lyme disease. It provides treatment protocols, diagnostic guidelines, and photographic case histories. It assists in forming support groups, offers referral services, maintains a speakers bureau, sponsors medical seminars, and conducts research. The foundation maintains a registry of infected pregnant women and congenital cases.

Box 332
Tolland,  CT 06084-0332
Phone: 860-870-0070
Toll Free: 800-886-LYME (5963) (24 hour)
Fax: 860-870-0332
Email: info@lyme.org
Website: http://www.lyme.org

Muscular Dystrophy Association

3300 E. Sunrise Drive
Tucson,  AZ 85718
Toll Free: 800 572-1717
Email: mda@mdausa.org
Website: http://www.mdausa.org

National Alopecia Areata Foundation (NAAF)

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.

14 Mitchell Blvd.
San Rafael,  CA 94903
Phone: 415-472-3780
Fax: 415-472-5343
Email: info@naaf.org
Website: http://www.naaf.org

National Association for Pseudoxanthoma Elasticum (NAPE)

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
Email: napestlouis@sbcglobal.net
Website: http://www.pxenape.org

National Eczema Association for Science And Education (NEASE)

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
Email: info@nationaleczema.org
Website: http://www.nationaleczema.org

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.

2121 S. Towne Centre Place, Suite 300
Anaheim,  CA 92806
Phone: 714-921-0150
Fax: 714-921-6920
Email: nfa@fmaware.org
Website: http://www.fmaware.org

National Foundation For Ectodermal Dysplasias (NFED)

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.

410 East Main Street, P.O. Box 114
Mascoutah,  IL 62258-0114
Phone: 618-566-2020
Fax: 618-566-4718
Email: info@nfed.org
Website: http://nfed.org/

National Marfan Foundation (NMF)

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
Email: staff@marfan.org
Website: http://www.marfan.org

National Organization For Rare Disorders (NORD)

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 06813-1968
Phone: 203-744-0100
Toll Free: 800-999-6673
Fax: 203-798-2291
Email: orphan@rarediseases.org
Website: http://www.rarediseases.org

National Osteoporosis Foundation (NOF)

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.

1150 17th Street NW
Washington,  DC 20036
Website: http://www.nof.org

National Psoriasis Foundation (NPF)

6600 SW 92nd Ave., Suite 300
Portland,  OR 97223-7195
Phone: 503-244-7404
Toll Free: 800-723-9166
Fax: 503-245-0626
Email: getinfo@npfusa.org
Website: http://www.psoriasis.org

National Vitiligo Foundation, Inc. (NVF)

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.

P.O. Box 23226
Cinicinnati,  OH 45223
Phone: 513-541-3903
Fax: 614-261-8245
Email: info@nvfi.org
Website: http://www.nvfi.org

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.

P.O. Box 4491
Silver Spring,  MD 20914-4491
Phone: 301-299-0775
Fax: 301-299-3999
Website: http://www.nva.org

Nevus Outreach, Inc.

600 S.E. Delaware Avenue, Suite 200
Bartlesville,  OK 74003
Phone: 918-331-0595
Toll Free: 877-426-3887
Fax: 281-417-4020
Website: http://www.nevus.org

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
Email: bonelink@oif.org
Website: http://www.oif.org

Parent Project Muscular Dystrophy (PPMD)

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.

158 Linwood Plaza, Suite 220
Fort Lee,  NJ 07024
Phone: 201-944-9985
Toll Free: 800-714-5437
Fax: 201-944-9987
Email: info@parentprojectmd.org
Website: http://www.parentprojectmd.org

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
Email: info@pxe.org
Website: http://www.pxe.org

Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)

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.

P.O. Box 502
Milford,  CT 06460
Phone: 877-662-7737
Fax: 203-882-8362
Website: http://www.rsds.org

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
Email: sfinfo@scleroderma.org
Website: http://www.scleroderma.org

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
Email: sfgwinfo@sclerodermagw.org
Website: http://www.scleroderma.org/chapter/washingtondc

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 1411
San Francisco,  CA 94104
Phone: 415-834-9444
Toll Free: 800-441-CURE (2873)
Fax: 415-834-9177
Website: http://www.srfcure.org

Sjögren’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
Website: http://www.sjogrens.org

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 701
Washington,  DC 20036
Phone: 202-223-8224
Fax: 202-833-3472
Email: info@womenshealthresearch.org
Website: http://www.womenshealthresearch.org

Spondylitis Association of America (SAA)

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
Email: info@spondylitis.org
Website: http://www.spondylitis.org

Sturge-Weber Foundation (SWF)

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
Email: swf@sturge-weber.org
Website: http://www.sturge-weber.org/

The 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.

2701 Cottage Way #16
Sacramento,  CA 95825
Phone: 916-922-1298
Toll Free: 866-628-1298
Fax: 916-922-1458
Email: info@pemphigus.org
Website: http://www.pemphigus.org

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
Email: tma@myositis.org
Website: http://www.myositis.org

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
Email: pagetfdn@aol.com
Website: http://www.paget.org

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
Email: info@tsalliance.org
Website: http://www.tsalliance.org

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
Fax: 800-277-9474
Email: vf@vasculitisfoundation.org
Website: http://www.vasculitisfoundation.org

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: 540-301-1551
Email: info@vitiligosupport.org
Website: http://www.vitiligosupport.org

Xeroderma Pigmentosum Society, Inc.

Registry contacts: Jo-David Fine, M.D, M.P.H., and Madeline Weiner, R.N. Phone Numbers: Dr. Fine 615-329-0801; Madeline Weiner 919-929-1855

437 Snydertown Road
Craryville,  NY 12521
Phone: 518-851-2612
Toll Free: 877-977-2873
Email: xps@xps.org
Website: http://www.xps.org

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 http://www.niams.nih.gov/.