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NIAMS Coalition Members
Date Revised: October 15, 2004Coalition of professional and voluntary organizations concerned with the programs of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
American Academy of Dermatology (AAD)
The academy is the national professional organization for medical doctors who specialize in skin diseases. It conducts educational programs, publishes informational materials, and can provide physician referrals.
P.O. Box 4014
Schaumberg, IL 60168-4014
Phone: 847-330-0230
or toll free: 888-462-3376
Fax: 847-330-0050
Web site: www.aad.org
American Academy Of Orthopaedic Surgeons (AAOS)The academy is the professional society of bone and joint surgeons. It seeks to further knowledge in the diagnosis and treatment of bone-related diseases.
P.O. Box 2058
Des Plaines, IL 60017
Phone: 800-824-BONE (2663) (free of charge)
Web site: 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.
One IBM Plaza, Suite 2500
Chicago, IL 60611
Phone: 312-464-9700
Fax: 312-464-0227
Web site: 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 Blvd., Suite 310
Chevy Chase, MD 20815
Phone: 301-968-4100
Fax: 301-968-4185
Web site: www.aacom.org
American Autoimmune-Related Diseases Association, Inc. (AARDA)
The American Autoimmune Related Diseases Association (AARDA) is the only national nonprofit voluntary health agency dedicated to bringing a national focus and collaborative effort to the over 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.
Eastpointe
East Detroit, MI 48021
Phone: 586-776-3900
Toll free: 800-598-4668(leave message; not personally answered)
Fax: 586-776-3903
E-mail: aarda@aarda.org
Web: http://www.aarda.orgAmerican College of Rheumatology (ACR)
This professional organization of rheumatologists (doctors specializing in arthritis and related conditions) and associated health professionals is involved in research, education, and patient care. It provides educational materials and guidelines, as well as referrals to rheumatologists and other health professionals.
1800 Century Place, Suite 250
Atlanta, GA 30345
Phone: 404-633-3777
Fax: 404-633-1870
Web site: www.rheumatology.org
E-mail: acr@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
Web site: www.afmr.org
E-mail: admin@afmr.org
American Juvenile Arthritis Organization (AJAO)This organization of parents, health care professionals, and others interested in the problems of juvenile arthritis serves as an advocate for the needs of those with juvenile rheumatic diseases and related conditions. It is a council of the Arthritis Foundation.
1330 Peachtree Street, Suite 100
Atlanta, GA 30309
Phone: 404-872-7100
or toll free: 800-283-7800
Web site: www.arthritis.org (see "About Us")
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
Phone toll free: 800-274-4ANA (4262)
Fax: 301-628-5001
Web site: 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
Fax: 847-292-4905
Web site: www.aossm.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.
P.O. Box 22712
Houston, TX 77227-2712
Phone: 713-266-9617
Web site: 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
or toll free: 800-499-SKIN
Web site: www.americanskin.org
American Society for Bone and Mineral Research (ASBMR)This is a professional medical/scientific society established to bring together clinical and experimental scientists involved in the study of bone and mineral metabolism.
2025 M St., NW, Suite 800
Washington, DC 20036-2422
Phone: 202-857-1161
Web site: www.asbmr.org
E-mail: asbmr@smithbucklin.com
Arthritis FoundationThe Arthritis Foundation is the main voluntary organization devoted to the more than 100 forms of arthritis and related conditions. The foundation publishes pamphlets and a magazine. 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.
1330 West Peachtree Street, Suite 100
Atlanta, GA 30309
Phone: 404-872-7100
or toll free: 800-283-7800
Web site: www.arthritis.org
Arthritis Foundation/Metropolitan Washington ChapterThis is the Washington, D.C., area chapter of the Arthritis Foundation.
2011 Pennsylvania Avenue, NW, 6th floor
Washington, DC 20006
Phone: 202-537-6800
Fax: 202-537-6859
Web site: www.arthritis.org/communities/chapters/chapter.asp?chapid=32
E-mail: info.mwa@arthritis.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.
1800 Century Place, Suite 250
Atlanta, GA 30345-4300
Phone: 404-633-3777
Fax: 404-633-1870
Web site: www.rheumatology.org/arhp
E-mail: arhp@rheumatology.org
Biophysical SocietyThis 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.
9650 Rockville Pike
Bethesda, MD 20814
Phone: 301-530-7114
Fax: 301-634-7133
Web site: www.biophysics.org
E-mail: society@biophysics.faseb.org
Dermatology FoundationThis 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
(This organization is "research only." Contact should be made by U.S. mail or e-mail.)
E-mail: dfgen@dermatologyfoundation.org
Web site: www.dermfnd.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.
East Holly Ave., Box 56
Pitman, NJ 08071-0056
Phone: 856-256-2330
or toll free: 800-454-4DNA
Web site: http://dna.inurse.com
E-mail: dna@ajj.com
Dystrophic Epidermolysis Bullosa Research Association (DEBRA) of AmericaThis 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.
5 West 36th Street, Suite 404
New York, NY 10018
Phone: 212-868-1573
Fax: 212-868-9296
Web site: www.debra.org
E-mail: staff@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.
3200 Wilshire Blvd., Suite 1601, South Tower
Los Angeles, CA 90010
Phone: 213-368-3800
Fax: 213-427-0057
E-mail: staff@ednf.org
Web site: www.ednf.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.
3 Westwood Road
Lexington, MA 02420
Phone: 781-860-0501
Fax: 781-860-0599
E-mail: carol.perez@fshsociety.org
Web site: www.fshsociety.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
Web site: www.faseb.org
Foundation for Ichthyosis and Related Skin Types (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.
1601 Valley Forge Road
Lansdale, PA 19446
Phone: 215-631-1411
Fax: 215-631-1413
E-mail: info@scalyskin.org
Web site: www.scalyskin.org
Gluten Intolerance Group (Gig) of North AmericaThis 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.
15110 10th Avenue SW, Suite A
Seattle, WA 98166
Phone: 206-246-6652
Fax: 206-246-6531
E-mail: info@gluten.net
Web site: www.gluten.net
International Myeloma Foundation (IMF)The foundation sponsors research in multiple myeloma.
12650 Riverside Drive, Suite 206
North Hollywood, CA 91607-3421
Phone toll free: 800-452-2873
Fax: 818-487-7454
E-mail: TheIMP@myeloma.org
Web site: www.myeloma.org
International Pemphigus FoundationThe 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.
Atrium Plaza
828 San Pablo Ave. Suite 210
Albany, NY 94706
Phone: 510-527-4970
Fax: 510-527-8497
E-mail: pemphigus@pemphigus.org
Web site: www.pemphigus.org
Lupus Foundation Of America (LFA)This is the main voluntary organization devoted to lupus. The LFA provides services to people with lupus, works to educate the public about lupus, and supports lupus research. Through a network of more than 500 branches and support groups, the chapters offer information and referral services, health fairs, newsletters, publications, seminars, support group meetings, hospital visits, and telephone help lines.
2000 L Street, N.W., Suite 710
Washington, DC 20036
Phone: 202-349-1155
Fax: 202-349-1156
E-mail: lupusinfo@lupus.org
Web site: www.lupus.org
Lupus Foundation of Greater Washington
This chapter provides current information, educational programs, and outreach services to improve the quality of lives for people with lupus while also supporting research.
6120 Brandon Avenue
Suite 315
Springfield, VA 22150
Phone: 703-644-0058
Fax: 703-644-0038
E-mail: info@lupusgw.org
Web site: www.lupusgw.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
Fax: 860-870-0332
E-mail: lymefnd@aol.com
Web site: www.lyme.org
Muscular Dystrophy Association
3300 E. Sunrise Drive
Tucson, AZ 85718
Phone: 800 572-1717
E-mail: mda@mdausa.org
Web site: www.mdausa.org
Mycosis Fungoides Foundation
P.O. Box 374
Birmingham, MI 48012-0374
Phone: 248-644-9014
E-mail: info@mffoundation.org
Web site: mffoundation.org
Myositis Association of AmericaThe mission of the Myositis Association of America is to improve the lives of those affected by inflammatory myopathies. They seek out persons with inflammatory myopathies, provide a support network, act as a resource for patients and the medical community, advocate for patients, and promote research into the causes and treatment of the diseases.
1233 20th Street, NW, Suite 402
Washington DC 20036
Phone: 202-887-0088
Fax: 202-466-8940
E-mail: tma@myositis.org
www.myositis.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.
P.O. Box 150760
San Rafael, CA 94915-0760
Phone: 415-472-3780
Fax: 415-472-5343
E-mail: info@naaf.org
Web site: 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.
8764 Manchester Road, Suite 200
St. Louis, MO 63144-2724
Phone: 314-962-0100
E-mail: pxenape@napxe.org
Web site: www.napxe.org
National Association of Orthopaedic NursesThis 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 N. Michigan Avenue, Suite 2200
Chicago, IL 60611
Phone: 800-289-6266
Fax: 312-527-6658
E-mail: naon@smithbucklin.com
Web site: http://www.orthonurse.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
or toll free: 800-818-7546
Fax: 415-472-5345
E-mail: info@nationaleczema.org
Web site: www.nationaleczema.org
National Fibromyalgia AssociationThis 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.
2200 N. Glassell Street, Suite A
Orange, CA 92865
Phone: 714-921-0150
E-mail: nfa@fmaware.org
Web site: 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: 618-566-2100
Fax: 618-566-4718
E-mail: info@nfed.org
Web site: www.nfed.org
National Marfan Foundation (NMF)The foundation helps people who have Marfan syndrome and related connective tissue disorders. It provides information and materials about these disorders and how to seek appropriate care.
22 Manhasset Avenue
Port Washington, NY 11050-2023
Phone: 516-883-8712
or toll free: 800-8-MARFAN
Fax: 516-883-8040
E-mail: staff@marfan.org
Web site: 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 Kansas Avenue
P.O. Box 1968
Danbury, CT 06813-1968
Phone: 203-744-0100
or toll free: 800-999-6673
E-mail: orphan@rarediseases.org
Web site: www.rarediseases.org
National Osteoporosis Foundation (NOF)The foundation is dedicated to reducing the widespread prevalence of osteoporosis. It seeks to increase public awareness, educate the public, provide information to people with osteoporosis and their families, educate medical professionals, advocate increased government support for research, and support biomedical research.
1232 22nd Street, NW
Washington, DC 20037-1292
Phone: 202-223-2226
E-mail: patientinfo@nof.org
Web site: www.nof.org
National Psoriasis Foundation (NPF)This is an organization for people with psoriasis or psoriatic arthritis, their families and friends, and medical professionals. It supports research, encourages communication, fosters support groups, provides information, educates the public, and makes physician referrals.
6600 SW 92nd Ave., Suite 300
Portland, OR 97223-7195
Phone: 503-244-7404
or 800-723-9166
Fax: 503-245-0626
E-mail: getinfo@npfusa.org
Web site: www.psoriasis.org
National Sjogren's Syndrome AssociationThe association promotes public awareness of Sjogren's syndrome and encourages research into the cause and cure of the disorder. It also conducts educational and research programs.
E-mail: NICKofOHIO@aol.com
Web site: www.sjogrenssyndrome.org
National Vitiligo Foundation, Inc. (NVF)This nonprofit organization stimulates, coordinates, and sponsors scientific research on vitiligo and assists in making referrals for treatment. The foundation holds annual and regional meetings and sponsors symposia open to both professionals and the public. It publishes a newsletter twice a year and provides free informational brochures.
700 Olympic Plaza Circle, Suite 404
Tyler, TX 75701
Phone: 903-595-3713
Fax: 903-593-1545
E-mail: vitiligo@vitiligofoundation.org
Web site: www.nvfi.org/index.html
National Vulvodynia AssociationThe 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.
Box 4491
Silver Spring, MD 20914-4491
Phone: 301-299-0775
Fax: 301-299-3999
Web site: www.nva.org
Nevus Outreach, Inc.
1616 Alpha Street
Lansing, MI 48910
Phone: 877-4-A-NEVUS (426-3847)
E-mail: info@nevus.org
Web site: www.nevus.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 N. River Road, Suite 727
Rosemont, IL 60018-4226
Phone toll free: 800-626-6726
or 847-698-1625
Fax: 847-823-4921
E-mail ors@aaos.org
Web site: www.ors.org
Osteogenesis Imperfecta FoundationThis 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
or toll free: 800-981-2663
Fax: 301-947-0456
E-mail: bonelink@oif.org
Web site: www.oif.org
The Paget FoundationThis 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
or toll free: 800-23-PAGET
Fax: 212-509-8492
E-mail: pagetfdn@aol.com
Web site: www.paget.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.
1012 North University Blvd.
Middletown, OH 45042
Phone: (513) 424-0696
or toll free (800) 714-KIDS
Fax: (513) 425-9907
Email: patfurlong@aol.com
Web site: www.parentprojectmd.org
PXE InternationalThis 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
E-mail: info@pxe.org
Web site: 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
Web site: www.rsds.org
Scleroderma FoundationThis voluntary organization publishes information on scleroderma and funds research. It also offers patient education seminars, support groups, physician referrals, and information hotlines.
12 Kent Way
Suite 101
Byfield, MA 01922
Phone toll free: 800-722-4673
or 978-463-5809
Fax: 978-463-5809
E-mail: sfinfo@scleroderma.org
Web site: www.scleroderma.org
Scleroderma Foundation of Greater WashingtonThe 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
E-mail: sfgwinfo@sclerodermagw.org
Web site: www.scleroderma.org/chapter/washingtondc
Scleroderma Research FoundationThis voluntary organization is dedicated to research on scleroderma. It can provide a list of researchers who are studying scleroderma. In addition, the foundation provides general and technical information on scleroderma.
220 Montgomery Street, Suite 1411
San Francisco, CA 94104
Phone: 415-834-9444 or toll free: 800-441-CURE
Fax: 415-834-9177
E-mail: srf@srfcure.org
Web site: www.srfcure.org
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.
8120 Woodmont Avenue, Suite 530
Bethesda, MD 20814-1437
Phone (local): 301-718-0300
Phone toll free: 800-475-6473
Fax: 301-718-0322
Web site: www.sjogrens.org
Society for Investigative Dermatology (SID)This is the professional society promoting research in the skin and skin diseases and related subjects.
820 West Superior Ave., 7th floor
Cleveland, OH 44113-1800
Phone: 216-579-9300
Fax: 216-579-9333
E-mail: sid@sidnet.org
Web site: www.sidnet.org
Society for the Advancement of Women's Health ResearchThe 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
E-mail: info@womenshealthresearch.org
Web site: www.womens-health.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 toll free: 800-777-8189
E-mail: info@spondylitis.org
Web site: 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
Mount Freedom, NJ 07970
Phone: 973-895-4445
or toll free: 800-627-5482
Fax: 973-895-4846
E-mail: swf@sturge-weber.com
Web site: www.sturge-weber.com
Tuberous Sclerosis Alliance
801 Roeder Road, Suite 750
Silver Spring, MD 20910
Phone: 301-562-9890
or toll free: 800-225-6872
Fax: 301-562-9870
E-mail: info@tsalliance.org
Web site: www.tsalliance.org
Xeroderma Pigmentosum Society, Inc.
437 Snydertown Road
Craryville, NY 12521
Phone: 518-851-2612
or toll free: 877-977-2873
E-mail: xps@xps.org
Web site: 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/.
