Outside Organizations

Updated December 20, 2013

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
Other 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.

1501 M Street, NW
Washington, DC,  DC 60018-5701
Phone: 202-349-4277
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.

500 Cummings Center, Suite 4550
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 Osteopathic Association

142 East Ontario Street
Chicago,  IL 60611
Phone: 312-202-8000
Toll Free: 800-621-1773
Fax: 312-202-8200
Website: http://www.osteopathic.org/

American Physical Therapy Association (APTA)

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
Website: http://www.apta.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

American Society of Gene and Cell Therapy

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

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 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

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.

15000 Commerce Parkway, Suite C
Mt. Laurel,  NJ 08054
Toll Free: 800-454-4362
Fax: 856-439-0525
Email: dna@dnanurse.org
Website: 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

Health Partners Institute for Education and Research

8170 33rd Ave.
S. Bloomington,  MN 55425
Website: www.healthpartners.com/institute/contact/

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
Chicago,  IL 60611
Toll Free: 312-673-4992
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

Society for Pediatric Dermatology

8365 Keystone Crossing, Suite 107
Indianapolis,  IN 46240
Phone: 317-202-0224
Fax: 317-205-9481
Email: spd@hp-assoc.com
Website:


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 Behçetís Disease Association

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

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 (AF)

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.

1615 L Street, N.W.
Washington,  DC 20006
Phone: 202-887-1002
Website: http://www.arthritis.org

Autoinflammatory Alliance

P.O. Box 590354
San Francisco,  CA 94159
Phone: 415-831-8782
Email: karen@autoinflammatory.org
Website: http://www.autoinflammatory.org

Basal Cell Carcinoma Nevus Syndrome Life Support Network

P.O. Box 321
Burton,  OH 44021
Phone: 440-834-0011
Fax: 440-834-0132
Email: info@bccns.org
Website: http://www.bccns.org

Churg Strauss Syndrome Association

82 Pine Ridge Road
Montgomery,  MA 01085
Website: www.cssassociation.org

Cicatricial Alopecia Research Foundation

303 West State Street
Geneva,  IL 60134
Phone: 310-285-0525
Fax: 630-262-1520
Email: info@carfintl.org
Website: http://www.carfintl.org

Cure CMD

PO Box 701
Olathe,  KS 66051
Website: http://www.curecmd.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

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.

450 Bedford St.
Lexington,  MA 02420
Phone: 781-301-6060
Fax: 781-862-1116
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

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: http://www.geneticalliance.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
Phone: 202-367-1121
Fax: 202-367-2121
Email: info@ibmsonline.org
Website: http://www.ibmsonline.org

International Foundation of Autoimmune Arthritis

4055 W 138th Street, D
Hawthorne,  CA 90250
Phone: 877-609-4226
Website: www.IFautoimmunearthritis.org

International Myeloma Foundation (IMF)

The foundation sponsors research in multiple myeloma.

12650 Riverside Drive, Suite 206
North Hollywood,  CA 91607-3421
Toll Free: 818-487-CURE
Fax: 818-487-7454
Email: TheIMF@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.

P.O. Box 57062
Washington,  DC 20037
Phone: 202-787-5380
Toll Free: 888-349-1167
Fax: 202-787-5399
Email: info@lupusdmv.org
Website: http://www.lupusdmv.org

Lupus Foundation of Mid and Northern New York, Inc

P.O. Box 170
Verona,  NY 13478
Phone: 315-829-4272
Fax: 315-829-4272
Email: LupusInnovators@aol.com
Website: www.nolupus.org

Lupus Research Institute

The Lupus Research Institute provides funds for promising new ideas for curing, preventing, and treating lupus.

330 Seventh Ave, Suite 1701
New York,  NY 10001
Phone: 212-812-9881
Fax: 212-545-1843
Email: Lupus@LupusNY.org
Website: www.lupusresearchinstitute.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 Eosinophilia Myalgia Syndrome Network

155 Delaware Ave.
Lexington,  OH 44904
Phone: 201-868-9572
Email: nemsn.org@aol.com
Website: www.nemsn.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.

6 Executive Drive, Suite 2
Fairview Heights,  IL 62208
Phone: 618-566-2020
Fax: 618-566-4718
Email: info@nfed.org
Website: www.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.

10945 Reed Hartman Highway
Cinicinnati,  OH 45242
Phone: 513-793-6834
Fax: 513-793-6887
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.

9016 Rouen Lane
Potomac,  MD 20854
Phone: 301-299-0775
Fax: 301-299-3999
Website: http://www.nva.org

Nevus Outreach, Inc.

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

Pachyonychia Congenita Project

2386 East Heritage Way Suite B
Salt Lake City,  UT 84109
Phone: 801-401-6300
Website:

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: 201-944-9987
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

SAFE KIDS Worldwide

1301 Pennsylvania Avenue N.W. Suite 1000
Washington,  DC 20004
Phone: 202-662-0600
Website: http://www.safekids.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

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
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 601
Washington,  DC 20036
Phone: 202-223-8224
Fax: 202-833-3472
Email: info@womenshealthresearch.org
Website: http://www.womenshealthresearch.org

Soft Bones, Inc.

121 Hawkins Place, #267
Boonton,  NJ 07005
Phone: 973-453-3093
Website: www.softbones.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 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

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.

1331 Garden Highway #100
Sacramento,  CA 95833
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 Pagetís 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

US Pain Foundation, Inc.

670 Newfield Street, Suite B
Middletown,  CT 06457
Phone: 800-910-2462
Fax: 800-929-4062
Email: info@uspainfoundation.org
Website:

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: 816-436-8211
Fax: 816-436-8211
Email: vf@vasculitisfoundation.org
Website: http://www.vasculitisfoundation.org

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
Website: http://vitiligobond.org/

Vitiligo Research Foundation

1, Penn Plaza, #6205
New York,  NY 10119
Phone: 646-327-8169
Toll Free: 1-855-966-3555
Website:

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


Other Organizations

National Bone Health Alliance

1150 17th Street, NW, Suite 850
Washington,  DC 20036
Phone: 855-742-8179
Fax: 202-223-2237
Website:

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/.