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Dermatology - related Foundations and Organizations
Dermatology - related Foundations and Organizations
Dermatology-related organizations with links
American Autoimmune Related Diseases Association, Inc. (AARDA) (Lupus) 22100 Gratiot Ave. East Detroit, MI 48021 810-776-3900 800598-4668 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 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 atcp.org
Basal Cell Nevus Syndrome/Gorlin Syndrome (BCCNS Life Support Network) Kristi Schmitt Burr, Executive Director PO Box 321 Burton, OH 44021 440-834-0011 f440-834-0132 bccns.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
Charlie Foundation (melanoma advocacy) aimatmelanoma.org
Chronic Granulomatous Disease Association 2616 Monterey Road San Marino, CA 91108-1646 818-441-4118 Mary A. Hurley link
Cicatricial Alopecia Foundation (CARF) Sheila Belkin, CEO PO Box 64158 Los Angeles, CA 90064 310-475-2419 f310-475-4883 info@carfintl.ogr carfintl.org
Cornelia de Lange Syndrome Foundation 60 Dyer Ave. Collinsville, CT cdlsusa.org 06022 800-223-8355 203-693-0159 Julie A. Mairano, Ex. Dir.
Cutaneous Lymphoma Foundation Judy Jones, President PO Box 374 Birmingham, MI 48012 248-644-9014 info@clfoundation.org clfoundation.org
Degos Disease degosdisease.com
Ehlers-Danlos National Foundation (EDNF) Cynthia Lauren, President and CEO 3200 Wilshire Blvd. Suite 1601 South Tower Los Angeles, CA 90010 213-368-3800 clauren@ednf.org ednf.org
Epidermolysis Bullosa Research Association of America (DEBRA) 40 Rector Street, 14th Floor New York, NY 10006 212-513-4090 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.
Genetic Alliance 4301 Connecticut Ave., NW, #404 Washington, DC 20008-2304 202-966-5557 800-336-GENE geneticalliance.org
Gluten Intolerance Group of North America (GIG) (dermatitis herpetiformis) 15110 10th Ave. SW Suite A Seattle, WA 98166-1820 (206) 246-6531 gluten.net
Hereditary Hemorrhagic Telangiectasia Foundation International PO Box 8087 New Haven, CT 06530 410-357-9932 800-448-6389 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
Hidradenitis Suppurativa Foundation, Inc. Michelle Barlow, Executive Director & CEO 7895 Via Belfiore #4 San Diego, CA 92129 info@hs-foundation.org hs-foundation.org
Histiocytosis Association of America 302 N. Broadway Pitman, NJ 08017 609-589-6606 800-548-2758 histio.org
Inflammatory Skin Disease Institute (ISDI) LaDonna Williams, Director PO Box 1074 Newport News, VA 23601 757-223-0795 LaDonna.Williams@isdionline.org isdionline.org
International Fibrodysplasia Ossificans Progressiva Association (IFOPA) PO Box 196217 Winter Springs, FL 32719-6217 407-365-4194 ifopa.org
International Pemphigus Pemphigoid Foundation (IPPF) Janet Segall, Director of Patient Services & Education 2701 Cotage Way, Suite 16 Sacramento, CA 95825 916-9221298 jsegall @pemphigus.org pemphigus.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
National Alopecia Areata Foundation (NAAF) Vicki Kalabokes, Exec. Dir. 14 Mitchell Blvd. San Rafael, CA 94903-1953 415-472-3780 info@aaf.org naaf.org
National Association for Pseudoxanthoma Elasticum 3500 East 12th Ave. Denver, CO 80206 303-355-3866 napxe.org Carolyn Freedman, Ex. Dir.
National Ataxia Foundation (Ataxia-Telangiectasia) 2600 Fernbrook Lane, Suite 119 Plymouth, MN 55447-4752 763-553-0020 ataxia.org
National Eczema Association (NEA) Vicki alabokes, CEO 4460 Redwood Hwy. Suite 16D San Rafael, CA 94903 415-499-3474 info@nationaleczema.org nationaleczema.org
National Foundation for Ectodermal Dysplasias (NFED) PO Box 114 Mascoutah, IL 62258-0114 618-566-2020 info@nfed.org nfed.org
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 lymphnet.org
National Marfan Foundation 382 Main Street Port Washington, NY 11050 516-883-8712 800-862-7326 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 nf.org
National Foundation for Ectodermal Dysplasias (NFED) Malinda Heuring, Director of Education PO Box 114 Mascoutah, IL 62258 618-566-2020 info@nfed.org nfed.org
National Organization for Albinism & Hypopigmentation (NOAH) PO Box 959 E. Hampstead, NH 03826-0959 603-887-2310 800-473-2310 albinism.org
National Organization for Rare Disorders, Inc. PO Box 8923 New Fairfield, CT 06812-8923 203-746-6518 800-999-6673 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 ntsa.org Vicky Whittemore
Neurofibromatosis, Inc. 8855 Annapolis Rd., #110 Lanham, MD 20706-2924 301-577-8984 800-942-6825 TDD 410-461-5213 NFInc1@aol.com nfinc.org
Nevus Network PO Box 1981 Woodbridge,VA 22193 703-492-0253 405-377-3403 nevusnet@bigfoot.com nevusnetwork.org
Nevus Outreach, Inc. 1616 Alpha Street Lansing, MI 48910 877-426-3887 517-487-2306 info@nevus.org 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
Pachyonychia Congenita Project Mary Schwartz, Director 2386 E. Heritage Way, Suite B Salt Lake City, UT 84109 877-628-7300 Mary.Schwartz@pachyonychia.org pachyonychia.org
Proteus Syndrome Foundation (PSF) 6235 Whetstone Dr. Colorado Springs, CO 80918 719-264-8445 proteus-syndrome.org
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 scleroderma.org Karl Kastorf, Exec. Dir.
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
Sturge-Weber Foundation Karen Ball, Pres. & CEO PO Box 418 Mt. Freedom, NJ 07970-0418 973-895-4445 800-627-5482 kball@sturge-weber.org sturge-weber.org
Sturge-Weber Syndrome Community swscommunity.org
Vitiligo Support International Jackie Gardner, Executive Director PO Box 4008 Valley Village, CA 91617-0008 818-752-9002 info@vitiligosupport.org vitiligosupport.org
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
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