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Dermatology - related Foundations and Organizations

<p>Dermatology-related organizations with links<br /></p>

Dermatology-related organizations with links

American Academy of Dermatology aad.org

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.

Foundation for Ichthyosis & Related Skin Types (FIRST)   Jean Pickford, Exec. Dir.  1364 Welsh Road, G2 North Wales, PA 19454  215-619-0670 info@scalyskin.org  scalyskin.org

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

Incontinentia Pigmenti Support Network 34929 Elm Wayne, MI 48184

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

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

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

National Psoriasis Foundation  Randy Beranek, President & CEO  6600 SW 92nd Ave., Suite 300 Portland, OR 97223-7195   503-244-7404 800-723-9166  getinfo@psoriasis.org  psoriasis.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

National Vitiligo Foundation   611 South Fleishel Ave. Tyler, TX 75701   903-531-0074  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  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   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

PXE International, Inc. (Pseudoxanthoma Elasticum) 23 Mountain St.   Sharon, MA 02067
781-784-3817  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  scleroderma.org     Karl Kastorf, Exec. Dir.

Scleroderma Research Foundation  Pueblo Medical Commons 2320 Bath Street, Suite 307   Santa Barbara, CA 93105 805-563-1164  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  sjogrens.com   Alexis Stegemann, Exec. Dir.

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

Vascular Birthmarks Foundation birthmark.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

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

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