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ECTODERMAL DYSPLASIAS |
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Canadian Society for Ectodermal Dysplasia (Western Canada) 304 Hawkwood Blvd., NW Calgary, AB CAN T3G 2Y5 (416) 664-6121 National Foundation for Ectodermal Dysplasia 410 E. Main ST. PO Box 114 Mascoutah, IL 62258-0114 (618) 566-2020 (618) 566-4718 (fax) nfed1@aol.com |
-Fischer-Jacobsenclouston Syndrome -Focal Dermal Hypoplasia (FDH) Syndrome -Gingival Fibromatosis and Hypertrichosis -Gorlin-Chaudhry-moss Syndrome -Growth Retardation-Alopecia- Pseudoanodontiaoptic Atrophy -Hairy Elbows Dysplasia -Hallerman-Streiff Syndrome -Hay-Wells Syndrome -Hayden Syndrome -Hypodontia And NailDysgenesis -Hypomelanosis of Ito -Ichthyosiform Erythroderma- Deafnesskeratitis -Incontinentia Pigmenti Achromians -Johanson-Blizzard Syndrome -Jorgenson Syndrome -Keratitis Follicularis spinulosa Decalvans -Keratitis-Ichthyosis-Deafness (KID) Syndrome -Kid Syndrome -Kirghizian Dermatoosteolysis Langer-Giedion Syndrome -Zanier-Roubicek Syndrome -Xeroderma-Talipes-Enamel Defect -Walbaum-Deheane-Schlemmer Syndrome -TRP (Trichorhinophalangeal) Syndrome, Type I & II -Triphalangeal Thumbs-onychodystrophy- Deafness -Trichorhinophalangeal (TRP) Syndrome -Trichoodontoonychoder Mal Syndrome -Trichoodontoonycho-Hypohidrotic Dysplasia With Cataract -Trichoodontoonychial Dysplasia -Trichooculodermovertebral Syndrome -Trichonychodysplasia With Xeroderma -Trichonychodental Dysplasia -Trichofaciohypohidrotic Syndrome -Trichodysplasiaonychogryposis- Hypohidrosis-Cataract -Trichodentoosseous Syndrome: Types I, II & III -Tooth and Nail Syndrome -Skeletal Anomalies -Schinzel-Giedion Syndrome -Salamon Syndrome -Rothmund-Thompson's Syndrome -Rosseli-Gulienetti Syndrome -Robinson Syndrome -Alopecia Universala-Onychodystrophy- Total Vitiligo -Alopecia-Anosmia-Deafness- Hypogonadism -Alopecia-Onychodysplasia- Hypohidrosis -Ameloonychohypho-Hidrotic Dyplasia |
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EHLERS-DANLOS SYNDROME |
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Ehlers-Danlos National Foundation Linda Neumann-Potash, Executive Director 6399 Wilshire Blvd. Ste. 203 Los angeles, CA 90035 (323) 651-3038 (323) 651-1366 (fax) staff@ednf.org |
-India Rubber Skin -Van Meerkeren I Syndrome |
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EPIDERMOLYSIS BULLOSA, DYSTROPHIC |
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DEBRA: Dystrophic Epidermolysis Bullosa Research Association 40 Rector St., Ste. 1403 New York, NY 10006 (212) 513-4090 (212) 513-4099 (fax) staff.debra@exario.net |
-Hallopeau-Siemens Disease |
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EPILEPSY |
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American Epilepsy Society 342 North Main St. West Hartford, CT 06117-2507 (860) 586-7505 (860) 586-7550 (fax) info@aesnet.org Epilepsy Canada 1470 Peel St., 745 Montreal, QC CAN H3A 1T1 (877) SEIZURE (734-0873) (514) 845-7855 (514) 845-7866 (fax) epilepsy@epilepsy.ca http://www.epilepsy.caThe Epilepsy Foundation 4351 Garden city Dr. Landover, MD 20785-2267 (800) 332-4050 (301) 459-3700 (301) 577-2684 (fax) postmaster@efa.org http://www.efa.org |
-Hypomelanosis of Ito -Incontinentia Pigmenti Achromians -Infantile Spasms -Schinzel-Giedion Syndrome -Ring Chromosome 15 |
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ERB'S PALSY |
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Brachial Plexus/Erb's Palsy Support and Informational Network, Inc. PO Box 23 Larsen, WI 54947 (920) 836-9587 nationalbpi@powernetonline.com |
-ERB/Duchenne Palsy |
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EVANS SYNDROME |
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Evans Syndrome Support and Research Group c/o Lou Addington 5630 Devon St. Port Orange, FL 32127 (940) 760-3031 (904) 760-5583 (fax) |
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EXOSTOSE, MULTIPLE HEREDITARY |
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The MHE Coalition/MHE Family Support Group Chele Zelina, MHE coalition President 8838 Holly Ln. Olmsted Falls, OH 44138-2701 (440) 235-6325 (phone/fax) CheleZ1@aol.com http://www.geocities.com/mhecoalition MHE and Me Susan Wynn Director 14 Stony Brook Dr Pine Island, NY 10969 (845) 258-6058 mheandme@yahoo.com http://www.geocities.com/mheandme |
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EXTRACORPOREAL MEMBRANE OXYGENATION |
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ECMO Moms and Dads International Parent Support PO Box 53848 Lubbock, TX 79453 (806) 892-3348 (806) 792-1289 (fax) bgw@odsy.net |
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FABRY DISEASE |
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InternationIal Center for Fabry Diseases Department of Human Genetic Mount sinai School of Medicine Charlene Pearlman, MS, Genetic Counselor Box 1498 5th Ave. at 100th St. New York, NY 10029 (866) 322-7963 (for parents) (212) 659-6780 (fax) fabry.disease@mssm.edu |
-Hemorrhagic Nodular Purpura -Alpha-Galactosidase Deficiency -Anderson-Fabry Disease |
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FACIO-SCAPULOHUMERAL MUSCULAR DYSTROPHY |
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FSH Society, Inc. 3 Westwood Rd. Lexington, MA 02420 (781) 860-0501 (781) 860-0599 (fax) carol.perez@fshsociety.org |
-Infantile Facio-Scapulohumeral Muscular Dystrophy -Landouzy-Dejerine Muscular Dystrophy |
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FAMILIAL DYSAUTONOMIA |
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FD Familial Dysautonomia Foundation 343 Clarke Ave. W., Ste. 1103 Thornhill, ON CAN L4J 7K5 (905) 882-7725 (905) 764-7752 (fax) Dysautonomia Foundation 633 3rd Ave., 12th Fl. New York, NY10017 (212) 949-6644 (212) 682-7625 (fax) |
-Sensory Neuropathy with Anhidrosis, Congenital -Sensory and Autonomic Neuropathy, Hereditary |
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FATTY OXIDATION DISORDER |
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FOD Family Support Group 805 Montrose Dr. Greemsbprp. MC 27410 (336) 547-8682 fodgroup@aol.com |
-Acyl-Coa Dehydrogenase Deficiency, Medium-Chain |
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FETAL ALCOOHOL SYNDROME/EFFECT |
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Council on Alcohoism and Drug Abuse of Bergen, Inc. Ellen E. Rocca, Executive Director 10 E. Broadway hackensack, NJ 07601 (201) 488-8680 (201) 488-8724 (fax) bbccada@aol.com Family Empowerment Network (FEN) Georgiana Wilton, Director 610 langdon St. Rm 517 Madison, WI 53703 (800) 462-5254 fen@.dcs.wisc.edu http://www.dcs.wisc.edu/pda/hhi/fenFetal Alcohol Education Program 1975 main St. Concord, MA 01742 (508) 369-7713 National Organization on Fetal Alcohol Syndrome 216 G. St., NE Washington, DC 20002 (800) 66 NOFAS (66327) (info.line) (202) 785-4585 (202) 466-6456 (fax) information@nofas.org http://www.nofas.orgThe Fetal Alcohol Syndrome Family Resource Institute PO Box 2525 Lynnwood, WA 98036 (800) 999-3429 (253) 531-2878 (253) 531-2668 (fax) vicfas@hotmail.com http://www.fetalalcoholsyndrome.orgFetal Alcohol Support Network 2266 Homeland Dr. Mississauga, ON CAN L5K 1G6 (905) 822-0733 (voice/fax) |
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FG SYNDROME |
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FG Syndrome Family Alliance, Inc. 3839 NW Estaview Pl. Corvallis, OR 97330 (541) 753-8075 |
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FIBRODYSPLASIA OSSIFICANS PROGRESSIVA |
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International Fibrodysplasia Ossificans Progressiva Association PO Box 196217 Winter Springs, FL 32719-6217 (407) 365-4194 (407) 365-3212 (fax) |
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FOOD ALLERGY |
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The Food Allergy and Anaphylaxis Network 10400 Eaton Pl., Ste. 107 Fairfax, VA 22030 (800) 929-4040 (703) 691-2713 (fax) faan@foodallergy.org |
-Allergy -Allergy, Food |
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FRAGILE X SYNDROME |
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FRAXA Research Foundation 45 Pleasant St. Newburyport, MA 01950 (978) 462-1866 (978) 463-9985 (fax) info@fraxa.org National Fragile X Foundation PO Box 190488 (800) 688-8765 (510) 763-6223 (fax) natfx@fragilex.org http://www.FragileX.org |
-Fraxa |
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FREEMAN-SHELDON SYNDROME |
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Freeman-Sheldon Parent Support Group Joyce Dolcourt, Director 509 E. Northmont Way Salt Lake City, UT 84103 (801) 364-7060 fspsg@aol.com |
-Whistling Face-Windmill Vein Hand Syndrome -Whistling Face Syndrome |
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FRIEDREICH ATAXIA |
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Canadian Association of Friedreich's Ataxia 5620 C A Jobin St. Montreal, QC CAN H1P 1H8 (514) 321-8684 (514) 321-9257 (fax) Muscular Dystrophy Association Bob Mackle, Director of Public Information 3300 E. Sunrise Dr. Tucson, AZ 85718-3208 (800) 572-1717 (520) 529-5300 (fax) mda@mdausa.org http://www.mdausa.org http://www.mdaenespanol.orgMuscular Dystrophy Family Foundation, Inc. 2330 North Meridian St. Indianapolis, IN 46208-5730 (800) 544-1213 (317) 923-MDFF (6333) mdff@mdff.org http://www.mdff.org |
-Spinocerebellar Ataxia |