You are here: Home / Advocacy / Links / Advocacy groups and links

Advocacy groups and links

List of advocacy groups and foundations with links. For additions and corrections, please click 'comment' button at bottom of page.


American Autoimmune Related Diseases Association, Inc. (AARDA) (Lupus) 22100 Gratiot Ave. East Detroit, MI 48021   810-776-3900   800598-4668   www.aarda.org

Alliance of Genetic Support Groups 35 Wisconsin Circle, Suite 440 Chevy Chase, MD 20815 301-652-5553  Joan Weiss, Ex. Dir. geneticalliance.org

American Hair Loss Council (Alopecia) 30 Grassy Plain Road Bethel, CT 06801 888-873-9719   www.ahlc.org

American Porphyria Foundation PO Box 22712   Houston, TX 77227  713-266-9617 porphyriafoundation.com  Desiree Lyon, Ex. Dir.

American Skin Association, Inc. 150 East 58th Street, 33rd Floor   New York, NY 10155-0002   212-753-8260   fax # 212-688-6547   americanskin.org      Joyce Weidler

Association for Children with Russell-Silver Syndrome 22 Hoyt St. Madison, NJ 07940 201-377-4531  Jodi G. Zwain, Ex. Dir.

Ataxia-Telangiectasia Children’s Project  668 S. Military Trail Deerfield Beach, FL 33442   954-481-6611   800-543-5728  www.atcp.org

Beckwith-Wiedemann Syndrome Family Forum link
Beckwith-Wiedemann Syndrome Support Group link

Bloom’s Syndrome Registry Laboratory of Human Genetics New York Blood Center 310 East 67th St. New York, NY 10021 212-570-3075   James L. German III, MD

Chronic Granulomatous Disease Association 2616 Monterey Road San Marino, CA 91108-1646   818-441-4118 Mary A. Hurley link

Cornelia de Lange Syndrome Foundation 60 Dyer Ave. Collinsville, CT  cdlsusa.org 06022 800-223-8355 203-693-0159  Julie A. Mairano, Ex. Dir.

Dermatitis Herpetiformis Gluten Intolerance Group of North America 15110 10th Avenue, SW   Suite A Seattle, WA 98166 206-246-6652   www.gluten.net  Cynthia Kupper

Ehlers-Danlos National Foundation   6399 Wilshire Blvd.   Suite 510   Los Angeles, CA 90048 323-651-3038  www.ednf.org  Linda Neumann-Potash

Epidermolysis Bullosa Research Association of America (DEBRA) 40 Rector Street, 14th Floor New York, NY 10006 212-513-4090   www.debra.org    Miriam Feder, Exec. Dir.

Erythropoietic Protoporphyria Research and Education Fund (EPPREF)   Channing Laboratory 181 Longwood Ave. Boston, MA 02115-5804   617-525-2249

Familial Polyposis Registry (Gardner Syndrome) Cleveland Clinic Foundation Dept. of Colorectal Surgery Cleveland, OH 44195 216-444-6470  James Church, MD Exec. Dir.

Foundation for Ichthyosis & Related Skin Types (FIRST) 650 N. Cannon Avenue, Suite 17   Lansdale, PA 19446  800-545-3286  215-631-1411  www.scalyskin.org   Jean Pickford, Exec. Dir.

Genetic Alliance 4301 Connecticut Ave., NW, #404 Washington, DC 20008-2304   202-966-5557   800-336-GENE    www.geneticalliance.org

Gluten Intolerance Group of North America (GIG) (dermatitis herpetiformis)  15110 10th Ave. SW Suite A Seattle, WA 98166-1820 (206) 246-6531  www.gluten.net

Hereditary Hemorrhagic Telangiectasia Foundation International PO Box 8087 New Haven, CT 06530 410-357-9932 800-448-6389 www.hht.org Rita Van Bergejik, Ex. Dir.

Hermansky-Pudlak Syndrome Network, Inc. (HPS Network) One South Road Oyster Bay, NY 11771-1905   516-922-3440   800-789-9477

Histiocytosis Association of America 302 N. Broadway Pitman, NJ 08017 609-589-6606   800-548-2758  www.histio.org

Incontinentia Pigmenti Support Network 34929 Elm Wayne, MI 48184

International Fibrodysplasia Ossificans Progressiva Association (IFOPA) PO Box 196217 Winter Springs, FL 32719-6217  407-365-4194 ifopa.org

International Progeria Registry 
  NY State Institute for Basic Research 1050 Forest Hill Rd. Staten Island, NY10314   718-494-5333

Klippel-Trenaunay Support Group 5404 Dundee Rd. Edina, MN 55436 952-925-2596

Lupus Foundation of America, Inc.   1300 Piccard Drive, Suite 200   Rockville, MD 20850-4303   301-670-9292  800-558-0121 www.lupus.org   Deb Blom, Interim Exec. Dir.  Duane Peters, Dir. of Communications & Advocacy

Charlie Melanoma Foundation (melanoma advocacy)  www.charlie.org

National Alopecia Areata Foundation 710 C Street, Suite 11   San Rafael, CA 94901 415-456-4644  www.alopeciaareata.com      Vicki Kalabokes, Exec. Dir.

National Association for Pseudoxanthoma Elasticum  3500 East 12th Ave. Denver, CO 80206 303-355-3866  www.napxe.org  Carolyn Freedman, Ex. Dir.

National Ataxia Foundation (Ataxia-Telangiectasia) 2600 Fernbrook Lane, Suite 119 Plymouth, MN 55447-4752  763-553-0020  www.ataxia.org

National Eczema Association for Science & Education (NEASE) 1220 SW Morrison St., Suite 433   Portland, OR 97205   503-228-4430   800-818-7546  www.nationaleczema.org    Robert O. McAlister, Ph.D., Exec. Dir.

National Foundation for Ectodermal Dysplasias   410 E. Main Street  PO Box 114  Mascoutah, IL 62258-0114 618-566-2020 www.nfed.org    Mary Kaye Richter, Exec. Dir.

National Incontinentia Pigmenti Foundation (NIPF) 30 East 72nd St., 16th Floor New York, NY 10021 212-452-1231  nipf@pipeline.com

National Lymphatic & Venous Diseases Foundation, Inc.   255 Commandants Way Chelsea, MA 02150   617-889-2103   800-301-2103  link

National Lymphedema Network Latham Square 1611 Telegraph Ave., Suite 1111 Oakland, CA 94612-2138   510-208-3200   800-541-3259  www.lymphnet.org

National Marfan Foundation   382 Main Street   Port Washington, NY 11050   516-883-8712 800-862-7326  www.marfan.org Carolyn Levering, Exec. Dir.

National Neurofibromatosis Foundation (NNFF) 95 Pine St., 16th Floor New York, NY 10005   212-344-NNFF   800-323-7938  TDD:212-344-NNFF  www.nf.org

National Organization for Albinism & Hypopigmentation (NOAH) PO Box 959 E. Hampstead, NH   03826-0959  603-887-2310 800-473-2310   www.albinism.org

National Organization for Rare Disorders, Inc. PO Box 8923 New Fairfield, CT 06812-8923 203-746-6518   800-999-6673  www.rarediseases.org

National Pemphigus Foundation P.O. Box 9606 Berkeley, CA 94709-0606 510-527-4970 www.pemphigus.org     Janet Segall

National Psoriasis Foundation  6600 SW 92nd Ave., Suite 300 Portland, OR 97223-7195   503-244-7404 800-723-9166  www.psoriasis.org    Gail Zimmerman, Exec. Dir.

National Registry for Ichthyosis & Related Disorders University of Washington, Dept. of Dermatology Box 356524 Seattle, WA 98195-6524   800-595-1266 ichreg@u.washington.edu

National Tuberous Sclerosis Association, Inc. (NTSA) 8181 Professional Place, Suite 110 Landover, MD 20785 800-225-6872  301-459-9888  www.ntsa.org  Vicky Whittemore

National Vitiligo Foundation   611 South Fleishel Ave. Tyler, TX 75701   903-531-0074  www.vitiligofoundation.org    Shannon Ruesewald, Exec. Dir.

National Vulvodynia Association P.O. Box 4491 Silver Spring, MD 20914-4491 301-299-0775
fax # 301-299-3999  www.nva.org     Phyllis Mate, Exec. Dir.

Neurofibromatosis, Inc. 8855 Annapolis Rd., #110 Lanham, MD 20706-2924   301-577-8984   800-942-6825   TDD 410-461-5213 NFInc1@aol.com   www.nfinc.org

NevusNetworkPOBox1981Woodbridge,VA22193 703-492-0253 405-377-3403 nevusnet@bigfoot.com   www.nevusnetwork.org

Nevus Outreach, Inc.   1616 Alpha Street   Lansing, MI 48910   877-426-3887 517-487-2306 info@nevus.org    www.nevus.org       Kevin Williams, President

Osteogenesis Imperfecta Foundation 5005 W. Laurel St., Suite 210 Tampa, FL 33607    813-282-1161  Vonnie H. Coleman, Ex. Dir.  oif.org

Proteus Syndrome Foundation (PSF) 6235 Whetstone Dr. Colorado Springs, CO 80918 719-264-8445   www.proteus-syndrome.org

PXE International, Inc. (Pseudoxanthoma Elasticum) 23 Mountain St.   Sharon, MA 02067
781-784-3817  www.pxe.org    Ms. Sharon Terry, President

Research (Dermatology research)  dermatologyfoundation.org

Rubinstein-Taybi Parent Contact Group PO Box 146 Smith Center, KS 66967 913-697-2984

Scleroderma Foundation   89 Newbury Street Suite 201 Danvers, MA 01923-1075   978-750-4499   800-422-1113    Helpline: 800-722-HOPE  www.scleroderma.org     Karl Kastorf, Exec. Dir.

Scleroderma Research Foundation  Pueblo Medical Commons 2320 Bath Street, Suite 307   Santa Barbara, CA 93105 805-563-1164  www.srfcure.org  Sharon Monsky

Shade Foundation (melanoma advocacy)  shadefoundation.org

Share & Care (Cockayne Syndrome) Network, Inc.PO Box 552 Stanleytown, VA 24168-0552    540-629-2369  cockayne@kimbanet.com   www.kimbanet.com/cockayne

Sjögren’s Syndrome Foundation   333 N. Broadway, Suite 2000    Jericho, NY 11753    516-933-6365  www.sjogrens.com   Alexis Stegemann, Exec. Dir.

Sturge-Weber Foundation   PO Box 418   Mt. Freedom, NJ 07970-0418   973-895-4445   800-627-5482  www.sturge-weber.com  Karen Ball, Exec. Dir.

Xeroderma Pigmentosum Registry UMD New Jersey Medical School Department of Pathology Medical Science Building, Room C-520 185 S. Orange Ave. Newark, NJ 07103-2714   201-982-6255

Xeroderma Pigmentosum Society   PO Box 4759   Poughkeepsie, NY 12602 518-851-2612 xps@xps.org    www.xps.org    Caren Mahar

Document Actions

Log in


Forgot your password?
New user?