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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.
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
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
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 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
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
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
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.
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
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
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
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