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GALACTOSEMIA |
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Parents of Galactosemic Children Inc. 885 Del Sol St. Sparks, NV 89436 (775) 626-0885 |
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GASTROESOPHAGEAL REFLUX |
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Gastroesophageal Reflux (GER) Pediatric/Adolescent Gastroesophageal Reflux Association Inc. (PAGER) PO Box 1153 Germantown, MD 20875-1153 (301) 601-9541 gergroup@aol.com |
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GASTROINTESTINAL DISORDERS |
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The Oley Foundation 214 Hun Memorial Albany Medical Center, A-28 Albany, NY 12208-3478 (800) 776-OLEY (6539( (518) 262-5079 (518) 262-5528 (fax) iBishopJ@mailamc.edu |
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GAUCHER DISEASE |
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National Gaucher Foundation 5410 Edson Ln., Ste. 260 Rockville, MD 20852-3130 (800) 428-2437 (301) 816-1515 (301) 816-1516 (fax) ngf@gaucherdisease.org |
-Glucosyl Cerebroside Lipidosis -Splenic Anemia, Familial |
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GENETIC DISORDERS |
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Genetic Alliance, Inc. Mary Davidson Executive Director 4301 Connecticut Ave. NW, #404 Washington, DC 20008-2304 (202) 966-5557 (202) 966-8553 (fax) info@geneticalliance.org Association of Genetic Support Inc. (AGSA) 66 Albion St. Surry Hills, Australia NSW 2010 (02) 9211 1462 (02) 9211 8077 (fax) agsa@ozomail.com.au http://www.agsa-geneticsupport.org.auNortheast VCFS Support Group Maureen Anderson Coordinator 2 Lansing Dr. Salem, NH 03079 (603) 898-6332 MLADJA@aol.com http://www.vcfsef.org |
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GENITALIA, AMBIGUOUS |
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Ambiguous Genitalia Support Network (AGSN) PO Box 313 Clements, CA 95227-0313 Agsn@jps.net |
-Wilm's Tumor |
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GLAUCOMA |
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Glaucoma Research Foundation 490 Post St. Ste. 1427 San Francisco, CA 94102 (800) 826-6693 (415) 986-3162 info@glaucoma.org |
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GLUTARIC ACIDURIA, TYPE I |
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International Organization for Glutaric Aciduria, Type I IOGA Rd #4, Box 299-A Blairsville, PA 15717 (724) 459-0179 cswelch@helicon.net |
-Glutaricaciduria I |
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GLUTEN INTOLERANCE |
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Gluten Intolerance Group 15110 10 Ave. SW, Ste. A Seattle, WA 98116-1820 (206) 246-6652 (206) 246-6531 (fax) info@gluten.net |
-Gluten-Sensitive Enteropathy |
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GLYCOGEN STORAGE DISEASES |
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Association for Glycogen Storage Disease PO Box 896 Durant, IA 52747 (563) 785-6038 (voice/fax) Glycogen Storage Disease List Serve To register send e-mail to : LISTSERV@MAELSTROM.STJOHNS.EDU |
-Glycogenoses -Hers Disease -Hepatophosphorylase Deficiency Glycogenosis -Von Gierke Disease -Tarui Disease -Acid Maltase Deficiency -Amylo-1, 6-Glucosidase Deficiency -Amylopectinosis -Andersen Disease |
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GOLDENHAR SYNDROME |
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Goldenhar Syndrome Research and Information Fund Lori Torman, Director 204 37th Ave. N #127 St. Petersburg, FL 33704 (813) 522-5722 ltorman@tampabay.rr.com |
-Goldenhar-Gorlin Syndrome -Hemifacial Microsomia |
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GRANULOMATOUS DISEASE, CHRONIC |
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Chronic Granulomatous disease Association Inc. c/o mary Hurley, President 2616 Monterey Rd. san Marino, CA 91108 (626) 441-4118 cgda@socal.rr.com |
-Immunologic Diseases |
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GROUP B STREP |
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Group B Strep Association PO Box 16515 Chapel Hill, NC 27516 (919) 932-5344 (919) 932-3657 (fax) |
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GROWTH DISORDERS |
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Human Growth Foundation 997 Glen Cove Ave. Glen Head, NY 11545 (800) 451-6434 (516) 671-4041 (516) 671-4055 (fax) hgf1@hgfound.org Little People's Research Fund 80 Sister Pierre Dr. Towson, MD 21204 (800) 232-5773 (410) 494-0055 (410) 494-0062 (fax) lprf@lprf.org http://www.lprf.orgMAGIC Foundation 6645 W. North Ave. Oak Park, IL 60302 (800) 362-4423 (708) 383-0808 (fax) (708) 383-0899 mary@magicfoundation.org http://www.magicfoundation.org |
-Hypothyroidism, Congenital -Intrauterine Growth Retardation -Jeune Syndrome -Johanson-Blizzard -Kallman Syndrome -Spondyloepiphyseal Dysplasia Tarda -Spondyloepiphyseal Dysplasia Congenita -Skeletal Dysplasia -Seckel Syndrome -Schinzel-Giedion Syndrome -Achondroplasia -Albright Syndrome |
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GUILLAIN-BARRE SYNDROME |
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Guillain-Barre Syndrome Support Group of Ontario c/o M.D.A.C 2345 Yonge St., Ste. 901 toronto, On CAN M4P 2E5 (800) 567-2873 (519) 747-5777 (519) 747-5987 (fax) info@brenfile.com Gullain-Barre Syndrome Foundation International PO Box 262 Wynnewood, PA 19096 (610) 667-0131 (610) 667-7036 (fax) GBINT@ix.net.com.com |
-Kussmaul-Landry Paralysis -Landry Ascending Paralysis |
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HALLERVORDEN-SPATZ SYNDROME |
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Hallervorden-Spatz syndrome Association Patricia V. Wood President 2082 Monaco Ct. El Cajon, CA 92019 (619) 588-2315 (619) 588-4093 (fax) HSSA-KWPAC@msn.com |
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HEAD INJURY |
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FOTHI Friends Of The Head Injury Association. Rose Rees (780) 967-2468 (Fax/Phone) fothi@glenevis.com |
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HEARING IMPAIRMENTS |
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Alexander Graham Bell Association for the Deaf and Hard of Hearing 3417 Volta Pl. NW Washington, DC 20007-2778 (202) 337-5220 (voice/TDD) (202) 337-8314 (fax) lquigley@agbell.org American Society for Deaf Children PO Box 3355 Gettysburg, PA 17325 (800) 942-2732 (voice/TDD) (717) 334-7922 (217) 334-8808 (fax) asdc1@aol.com http://www.deafchildren.orgAmerican Speech, Language, Hearing Association 10891 Rockville Pike (800) 634-8255 (301) 897-5700 (301) 571-0457 (fax) http://www.asha.orgAuditory-Verbal International 2121 Eisenhower Ave., Ste. 402 Alexandria, VA 22314 (703) 739-1049 (703) 739-0395 (fax) audiverb@aol.com http://www.auditory-verbal.orgBetter Hearing Institute--U.S. and Canada 515 King St., Ste. 420 Alexandra, VA 22314 (800) 327-9355 (voice/TDD) (703) 684-3391 Cochlear Implant Association, Inc. 5335 Wisconsin Ave. NW Washington, DC 20015 (202) 895-2781 (202) 895-2782 (fax) 7207.3114@compuserve.com Deafness Research Foundation 1225 1 St., Ste. 500 Washington, DC 20005 (202) 289-5850 (voice/TDD): http://www.hearinghealth.netGallaudet University Office of Public Relations 800 Florida Ave., NE Washington, DC 20002-3695 (202) 651-5000 (202) 651-5608 (TDD) (202) 651-5704 (fax) public.relations@gailaudet.edu http://www.gallaudet.eduHEAR Now: The Us Program of the Starkey Hearing Foundation 4248 Park Glen Rd. Minneapolis MN 55416 (800) 648-4327 (952) 828-6946 (fax) nonprofit@starkey.com John Tracy Clinic for Preschool Deaf Children 806 W. Adams Blvd. Los Angeles, CA 90007 (800) 522-4582 (voice/TDD) (213) 748-5481 (213) 747-2924 (TDD) (213) 749-1651 (fax) mmartindale@johntracy-clinic.org http://www.johntracyclinic.orgLead Line House Ear Institute 2100 W. Third St., 5th Fl. Los Angeles, CA 90057 (800) 352-8888 (voice/TDD) (800) 287-4763 (voice/TDD) Canada only) (213) 484-2642 (213) 483-4431 (TDD) (213) 483-8789 (fax) blincoln@hei.org http://www.hei.orgNational Association of the Deaf 814 Thayer Ave., Ste. 250 Silver Spring, MD 20910-4500 (301) 587-1788 (301) 587-1789 (TDD) (301) 587-1791 (fax) nadinfo@nad.org http://www.nad.comNational Deaf Education Network and Clearinghouse KDES PAS-6 800 Florida Ave., NE Washington, DC 20002-3695 (202) 651-5031 (202) 651-5052 (TDD) (202) 651-5044 (fax) Clearinghouse.Infotogo@gallaudet.edu http://clerccenter.gallaudet.eduSEE Center for the Advancement of Deaf Children PO Box 1181 Los Alamitos, CA 90720 (562) 430-1467 (voice/TDD) (562) 795-6614 (fax) seectr@aol.com http://www.seecenter.orgSHHH: Self Help for Hard of Hearing People 7910 Woodmont Ave., Ste. 1200 Bethesda, MD 20814 (301) 657-2248 (301) 657-2249 (TDD) (301) 913-9413 (fax) National@shhh.org http://www.shhh.orgTelecommunications for the Deaf, Inc. 8630 Fentton St., Ste. 604 Silver Spring, MD 20910-3803 (301) 589-3786 (301) 589-3006 (TDD) (301) 589-3797 (fax) info@tdi-online.org The Canadian Hearing Society 271 Spadina R. Toronto, ON CAN M5R 2V3 (416) 928-2500 (416) 964-0023 (TDD) (416) 928-2525 (fax) info@chs.ca http://www.chs.caThe Learning to Listen Foundation Auditory Verbal Therapy Phillips House North York General Hospital 10 Buchan Ct. Toronto, ON CAN M2J 1V2 (416) 491-4648 (416) 491-7215 (fax) westabro@nyggh.on.ca http://www.learningtolisten.orgNational Cued Speech Association (NCSA) 23970 Hermitage Rd. Cleveland, OH 44122-4008 (216) 292-6213 (voice/TDD) (800) 459-3529 (voice/TDD) cuedpdisc@aol.com http://www.cuedspeech.org |
-Johanson-Blizzard Syndrome -Kallman Syndrome -Keratitis-Ichthyosis-Deafness (KIDS) Syndrome -Kid Syndrome -Triphalangeal Thumsonychodystrophy- Deafness -Surdicardiac Syndrome -Sulfatidosis, Juvenile, Austin Type -Schinzel-Giedion Syndrome -Ring Chromosome 18 -Rapp-Hodgkins Syndrome -Alport Syndrome -Alstrom Syndrome |
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HEART DISORDERS |
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American Heart Association 7272 Greenville Ave. Dallas, TX 75231-4596 (800) 242-8721 (214) 706-1179 (214) 706-2139 (fax) inquires@heart.org CHASER: Congenital Heart Anomalies--Support, Education, & Resources, Inc. 2112 N. Wilkins Rd. Swanton, OH 43558 (419) 825-5575 (419) 825-2880 (fax) chaser@compuserv.com myer106w@cdc.gov http://www.csun.edu/~hfmth006/chaserChildren's Heart Association for Support and Education c/o Cardiac Clinic Hosp. For Sick Children Cathy Sikora 555 University Ave. Toronto, ON CAN S5G 1X8 (416) 813-5848 (416) 813-5582 (fax) Kids With Heart National Association for Children's Heart Disorders, Inc. 1578 Careful Dr. Green Bay, WI 54304-2941 (800) 538-5390 (phone/fax-US only) (920) 498-0058 (phone/fax-outside US) kdswhrit@execpc.com |
-Hypoplastic Left Heart Syndrome -Kearns-Sayre Syndrome -Ventricular Defects |
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HEMIMEGALENCEPHALY |
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Hemimegalencephaly Support Group Sue Cowper 40 Olympic Ave. Shepparton 3630 Victoria, Australia Hmegroup@cv.quik.com.au |
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HEMIPLEGIA, ALTERNATING |
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Alternationg Hemiplegia of Childhood Foundation Lynn Egan, Vice President, Parent Support 239 Nevada St. Redwood city, CA 94062 (650) 365-5798 (phone/fax) laegan6@sbcglobal.net |
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HEMOPHILIA |
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National Hemophilia Foundation 116 W. 32nd St., 11th Fl. New York, NY 10001-3212 (800) 424-2639 (212) 328-3700 (212) 328-3777 (fax) info@hemophilia.org World Federation of Hemophilia 1425 Rene Levesque Blvd. W. Ste. 1010 Montreal, QC CAN H3G 1T7 (514) 875-7944 (514) 875-8916 (fax) wfh@wfh.org |
-Von Willerbrand Disease |
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HEMORRHAGIC TELAGIECTASIA, HEREDITARY (HHT) |
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Hereditary Hemorrhagic Telangiectasia (HHT) Foundation International, Inc. PO Box 8087 New Haven, CT 06530 (800) 448-6389 (410) 357-9931 (fax) hhtinfo@hht.org |
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HERMANSKY-PUDLAK SYNDROME |
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HermanskyPudlak Syndrome Network Inc. One South Rd. Oyster Bay, NY 11771 (800) 789-9477 (516) 922-3440 (516) 922-4022 (fax) hpsnet@worldnet.att.net |
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HERMAPHRODITISM |
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Intersex Society of North America Cheryl Chase, Executive Director PO Box 301 Petaluma, CA 94953 (707) 636-0420 (707) 636-0419 (fax) info@isna.org |
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HERNIA, DIAPHRAGMATIC |
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CHERUBS The Association of Congenital Diaphragmatic Hernia Research, Advocacy, and Support. 1109 Williamsboro St. Oxford, NC 27565 (919) 693-8158 (866) 603-1944 (707) 924-1114 (fax) info@cherubs-cdh.org |
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HISTIOCYTOSIS |
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Histiocytosis Association of America 72 E. Holly Ave., Ste. 101 Pitman, NJ 08071 (800) 548-2758 (US and Canada) (856) 589-6606 (856) 589-6614 (fax) histiocyte@aol.com |
-Langerhans Cell Histiocytosis -Xanthogranulomatosis, Juvenile |
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HOLOPROSENCEPHALY |
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The Carter Centers for Brain Research in Holoprosencephaly and Related Malformations c/o Dr. Nancy Clegg Texas Scottish Rite Hospital for Children, Dept. of Neurology Dallas, TX 75219 (214) 559-8411 (214) 559-8383 (fax) hpe@tsrh.org |
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HYDROCEPHALUS |
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The Guardians of Hydrocephalus Research Foundation National Headquarters 2618 Ave. Z Brooklyn, NY 11235 (718) 743-4473 (718) 743-1171 (fax) GHRF2618@aol.com http://ghrf.hmestead.com/ghrf.html Hydrocephalus Association 870 Market St., Ste. 705 San Francisco, CA 94102 (415) 732-7040 (415) 732-7044 (fax) hydroassoc@aol.com http://www.hydroassoc.orgHydrocephalus Support Group, Inc. PO Box 4236 Chesterfied, MO 63006-4236 (636) 532-8228 (636) 995-4108 (fax) dydrobuff@aol.com National Hydrocephalus Foundation 12413 Centralia Rd. Lakewood, CA 90715-1623 (562) 402-3523 (562) 924-6666 (fax) hydrobrat@earthlink.net http://www.nhfonline.org |
-Warburg Syndrome -Walker-Warburg Syndrome |
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HYPERLEXIA |
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Canadian Hyperlexia Association 300 John St. PO Box 87673 Thornhill, ON CAN L3T 7R3 (905) 886-9163 (905) 886-4624 (fax) cha@ican.net American Hyperlexia Association 195 W. Spangler, Ste. B Elmhurst, IL 69126 (630) 415-2212 (630) 530-5909 (fax) webmaster@hyperlexia.org http://www.hyperlexia.org |
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HYPOPARATHYROIDISM |
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Hypoparathyroidism Association, Inc. 2835 Salmon St. Idaho Fall, ID 83406 (208) 524-3857 (208) 524-2619 (fax) |
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ICHTHYOSIS |
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FIRST: Foundation for Ichthyosis and Related Skin Types 650 N. Cannon Ave., Ste. 17 Lansdale, PA 19446 (800) 545-3286 (215) 631-1411 (215) 631-1413 (fax) info@scalyskin.org |
-Keratitis Follicularis Spinulosa Decalvans -Keratitis-Ichthyosis-Deafness (KID) Syndrome -Kid Syndrome -Tay Syndrome -Sulfatidosis, Juvenile, Austin Type |
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ILLNESS, TERMINAL |
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Children's Hospice International Ann Armstrong-Dailey, Founding Director 901 N. Pitt St. Ste 230 Alexandria, VA 22314 (800) 2-4-CHILD (2420-4453) (703) 684-0330 (703) 684-0226 (fax) chiorg@aol.com |
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IMMUNE DISORDERS |
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Immune Deficiency Foundation 40 W. Chesapeake Ave., Ste. 308 Towson, MD 21204 (800) 296-4433 (410) 321-6647 (410) 321-9165 (fax) idf@primaryimmune.org |
-Inclusion Body Myostisis -Wiskott-Aldrich Syndrome -Severe Combined Immunodeficiency (SCID) -SCID |
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INCONTINENCE |
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National Association For Continence Nancy Muller, Executive Director PO Box 8310 Spartanburg, SC 29305 (864) 579-7900 (864) 579-7902 (fax) memberservices@nafc.org Simon Foundation for Continence PO Box 835F Wilmette, IL 60091 (800) 237-4666 (847) 864-3913 (847) 864-9758 (fax) simoninfo@simonfoundation.org http://www.simonfoundation.org |
-Urologic Disorders |
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INCONTINENTIA PIGMENTI |
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National Incontinentia Pigmenti Foundation 30 E. 72th St., 16th Fl. New York, NY 10021 (212) 452-1231 (212) 452-1406 (fax) ipif@ipif.org |
-Incontinentia Pigmenti Achromians |
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INTESTINAL PSEUDO-OBSTRUCTION SYNDROME |
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International Foundation For Functional Gastrointestinal Disorders (IFFGD) PO Box 17084 Milwaukee, WI 53217-8076 (414) 964-1799 (414) 964-7176 (fax) aanastas@iffgd.org Association of Gastrointestinal Motility Disorders, Inc. AGMD International Corporate Hdqtrs. 11 North St. Lexington, MA 02420 (781) 861-3874 (781) 861-7834 (fax) AGMDInc@aol.com |
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JOUBERT SYNDROME |
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Joubert Syndrome Foundation 1931 S. Carlinda Columbia, MD 21046 (410) 997-8094 joubertduquette@comcast.net |
-Vermis Cerebellar Agenesis |