|
NAGER & MILLER SYNDROMES |
|
|
Foundation for Nager and Miller Syndromes (FNMS) 1827 Grove St. #2 Glenview, IL 60025-2913 (800) 507-3667 (847) 724-6449 (fax) fnms@interaccess.com |
-Acrofacial Dysostosis, Nager Type |
|
NEUROFIBROMATOSIS |
|
|
National Neurofibromatosis Foundation John Radziejewski Director of Public Education 95 Pine St., 16th Floor New York, NY 10005 (800) 323-7938 (212) 747-0004 (fax) nnff@nf.org Neurofibromatosis, Inc. 9320 Annapolis Rd., Ste. 300 Lanham, MD 20706-2924 (800) 942-6825 (301) 918-4600 (301) 918-0009 (fax) nfinc1@aol.com http://www.nfinc.org |
-Von Recklinghausen Disease |
|
NEUROLOGICAL DISORDERS |
|
|
Association for Comprehensive Neurotherapy Latitudes PO Box 210848 Royal Palm Beach, FL 33421 (561) 798-0472 (561) 798-9820 (fax) acn@latitudes.org Children's Neurobiological Solutions 1726 Franceschi Rd. Santa Barbara, CA 93103 (866) 267-5580 or (805) 965-8838 info@cnsfoundation.org The Colleen Giblin Foundation Meg Minassian, Exec, Dir. 690 Kinderkamack Rd., Ste. 104 Oradell, NJ 07649 (201) 262-2463 (201) 262-6442 (fax) cgf01@aol.com http://www.colleengiblinfound.org |
|
|
NEUROTRANSMITTER DISEASES, PEDIATRIC |
|
|
Pediatric Neutransmitter Disease Association 6 Nathan Dr. Plainview, NY 11803 (516) 937-0049 PND@pndassoc.org |
|
|
NEUTROPENIA |
|
|
Neutropenia Support Assoc., Inc. PO Box 243 905 Corydon Ave. Winnipeg, MB CAN R3M 3S7 (800) 663-8876; (204) 489-8454 stevensl@neutropenia.ca Neutropenia SCN International Registry Puget Sound Plaza 1325 4th Ave., Ste. 620 Seattle, WA 98101-2509 (800) 726-4463 (206) 543-9749 (206) 543-3668 (fax) registry@u.washington.edu http://www.depts.washington.edu/registry |
|
|
NEVI, GIANT CONGENITAL |
|
|
Nevus Network BJ Kelly PO Box 305 West Salem, OH 44287 (419) 853-4525 info@nevusnetwork.org |
|
|
NIEMANN-PICK DISEASE |
|
|
National Niemann-Pick Disease Foundation, Inc. Nadine M. Hill, Associate Director 415 Madison Ave. PO Box 49 Fort Atkinson, WI 53538 (920) 563-0930 (920) 563-0931 (fax) nnpdf@cident.com Ara Parseghian Medical Research Foundation 3830 E. Campo Abierto, Ste. 105 Tucson, AZ 85718 (520) 577-5106 (520) 577-5212 (fax) victory@parseghian.org http://www.parseghian.org |
- Sphingomyelin Lipidosis |
|
NOONAN SYNDROME |
|
|
(TNSSG) Noonan Syndrome Support Group, Inc. PO Box 145 Upperco, MD 21155 (888) 686-2224 (410) 374-5245 wandar@bellatlantic.net |
|
|
NORRIE DISEASE |
|
|
Norrie Disease Foundation Developmental Neurogenetics Unit Mass General Hospital CNY #6217 149 13 St. Charlestown, MA 02129 (617) 726-5718 (617) 724-9620 (fax) sims@helix.mgh.harvard.edu |
-Whitnall-Norman Syndrome -Anderson-Warburg Syndrome |
|
NUTRITION |
|
|
The Oley Foundation 214 Hun Memorial A-28 Albany Medical Center Albany, NY 12208 (800) 776-OLEY (6539) (518) 262-5079 (518) 262-5528 bishopj@mail.amc.edu |
|
|
OBSESSIVE-COMPULSIVE DISORDER |
|
|
OC Foundation 337 Notch Hill Rd. North Branford, CT 06471 (203) 315-2190 (203) 315-2196 (fax) info@ocfoundation.org |
-Trichotillomania -Tourette Syndrome |
|
OLLIER DISEASE |
|
|
Ollier/Maffuci Self-Help Group Hermann Schmid, Vice President 74 Aitchison Rd. Binghamton, NY 13905 Hschmid@stny.rr.com Olliers@aol.com |
|
|
OPITZ OCULOGENITOLARYNGEAL SYNDROME |
|
|
Opitz G/BBB Family Network PO Box 516 Grand Lake, CO 80447 (970) 627-8935 (phone/fax) (970) 627-8818 fax opitznet@mac.com |
|
|
OPSOCLONUS-MYOCLONUS SYNDROME |
|
|
Opsocionus-Myoclonus Support Network c/o Connie Quinn 725 North St. Jim Thorpe, PA 18229 (717) 325-3302 clquinn@ptd.net |
|
|
OSTEOGENESIS IMPERFECTA |
|
|
Osteogenesis Imperfecta Foundation 804 W. Diamond Ave., Ste. 210 Gaithersburg, MD 20878 (800) 981-2663 (301) 947-0083 (301) 947-0457 (fax) bonelink@oif.org |
-Vrolik Disease, Type II |
|
OSTOMY |
|
|
United Ostomy Association, Inc. 19722 MacArthur Blvd., Ste. 200 Irvine, CA 92612 (800) 826-0826 (949) 660-8624 (949) 660-9262 (fax) uoa@deltanet.com United Ostomy Association of Canada, Inc. PO Box 825-Charles St. E College Park PO 444 Yonge St. Toronto, ON CAN M4Y 2N7 (416) 595-5452 (416) 595-9924 (fax) uoacan@astral.magic.ca http://www.3.ns.sympatico.ca/canada/ostomy |
-Urostomy |
|
OXALOSIS & HYPEROXALURIA |
|
|
Oxalosis & Hyperoxaluria Foundation 5727 Westcliffe Dr. St. Louis, MO 63129 (618) 281-7540 (888) 721-2432 ohf@ohf.ultranet.com |
|
|
PALLISTER-HALL SYNDROME |
|
|
Pallister-Hall Foundation Debra Messer RFD Box 3000,, Fairground Rd. Bradford, VT 05033 (802) 222-9683 messer@sover.net |
|
|
PALLISTER-KILLIAN SYNDROME |
|
|
Pallister-Killian Family Support Network 3700 Wyndale Ct. Ft Worth, TX 76109 (817) 927-8854 (817) 927-2073 (fax) |
-Teschler-Nicola/Killian Syndrome |
|
PELIZAEUS-MERZBACHER DISEASE |
|
|
The PMD Foundation 333 Homestead Ave. Haddonfield, NJ 08033 (856) 795-1539 (856) 396-0451 (fax) mlaprocido@pmdfoundation.org |
|
|
PHENYLKETONURIA (PKU) |
|
|
Children's PKU Network 1520 State St., Ste. 111 San Diego, CA 92101 (619) 233-3202 (619) 233-0838 (fax) pkunetwork@aol.com National Coalition for PKU & Allied Disorders PO Box 1244 Masfield, MA 02048 (877) 996-2723 http://www.pku-allieddisorders.org National PKU News c/o Virginia Schuett 6869 Woodlawn Ave. NE, Ste. 116 Seattle, WA 98115-5469 (206) 525-8140 (206) 525-5023 (fax) schuett@pkunews.org http://www.pkunews.org |
|
|
PITUITARY DISORDERS/TUMORS |
|
|
Pituitary Network Association PO Box 1958 Thousand Oaks, CA 91358 (805) 496-4932 (805) 557-1161 (fax) pna@pituitary.org |
-Acromegaly |
|
POLIO |
|
|
Vaccine Associated Polio Society PO Box 53212 Washington, DC 20009 (888) 363-8277 (703) 319-8277 (fax) NOVAPP@aol.com International Polio Network by GINI Joan L. Headley, Executive Director 4207 Lindell Blvd., No.110 Saint Louis, MO 63108 (314) 534-0475 (314) 534-5070 (fax) gini_int@msn.com http://www.post-polio.orgGazette International Networking Institute (GINI) Joan L. Headley: Executive Director 4207 Lindell Blvd No 110 Saint Louis, MO 63108 (314) 534-0475 (314) 534-5070 (fax) gini_intl@msn.com http://www.post-polio.org |
|
|
POLYPOSIS |
|
|
Familial Gastrointestinal Cancer Registry Mount Sinai Hospital 1157-660 University Ave. Toronto, ON CAN M5G 1X5 (416) 586-8334 (416) 586-8644 (fax) tberk@mtsinai.on.ca |
|
|
POMPE DISEASE |
|
|
The Children's Pompe Foundation 66 Witherspoon St, Ste 341 Princeton, NJ 08542 (609) 924-7192 (609) 767-2154 (fax) info@pompe.org |
-Acid Maltase Deficiency |
|
PORPHYRIA |
|
|
American Porphyria Foundation PO Box 22712 Houston, TX 77227 (713) 266-9617 (713) 871-1788 (fax) porphyrus@juno.com http://www.porphyriafoundation.com/ Canadian Porphyria Foundation Inc. Box 1206 Neepawa, MB CAN ROJ 1HO (204) 476-2800 (voice/fax) porphyria@cpf-inc.ca http://www.cpf-inc.ca |
-Swedish Porphyria -South African Genetic Porphyria |
|
PRADER-WILLI SYNDROME |
|
|
Ontario Prader-Willi Syndrome Association 1920 Yonge St. C104 Toronto, ON CAN M4S 3B2 (800) 563-1123 (416) 481-8657 (voice/fax) prader-willi@sympatico.ca http://www3.sympatico.ca/prader-willi/ Prader-Willi Foundation 223 Main St. Port Washington, NY 11050 (800) 253-7993 (516) 944-3173 (fax) foundation@prader-willi.inter.net The Prader-Willi Syndrome Association (USA) 5700 Midnight Pass Rd., Ste. 6 Sarasota, F 34242 (800) 926-4797 (941) 312-0400 (941) 312-0142 (fax) pwsausa@aol.com http://www.pwsausa.org |
|
|
PROGERIA |
|
|
International Progeria Registry c/o W. Ted Brown, MD, PhD NY State Inst. for Basic Research in Developmental Disabilities 1050 Forest Hill Rd. Staten Island, NY 10314 (718) 494-5333 (718) 494-4835 (fax) wtbibr@aol.com The Progeria Research Foundation, Inc. PO Box 3453 Peabody, MA 01961 (978) 535-2594 (978) 535-5849 (fax) progeria@netzero.com |
-Werner Syndrome -Souques-Charcot Syndrome |
|
PRUNE BELLY SYNDROME |
|
|
Prune Belly Syndrome Network 100 UCLA Medical Plaza Ste. 690 Los Angeles, CA 90095 (310) 825-6865 (310) 794-9962 (fax) |
|
|
PSEUDOXANTHOMA ELASTICUM (PXE) |
|
|
National Association for Pseudoxanthoma Elasticum 3500 E. 12th Ave. Denver, CO 80218-1910 (303) 355-3866 (303) 355-3959 (fax) (at Texas Tech.) derckd@ttuhsc.edu (at Denver hdqtrs.) pxenape@estreet.com |
-Systemic Mast Cell Disease |
|
PSORIASIS |
|
|
National Psoriasis Foundation 6600 SW 02nd Ave., Ste. 300 Portland, OR 97222 (503) 244-7404 (800) 723-9166 (503) 245-0626 (fax) getinfo@NPFUSA.org |
|
|
PURINE METABOLIC DISORDERS |
|
|
Purine Research Society Tahma Metz: Executive Director 5424 Beech Ave. Bethesda, MD 20814-1730 (301) 530-0354 (301) 564-9597 (fax) purine@erols.com http://www2.dgsys.com~purine/ |
|
|
PURPURA, IDIOPATHIC THROMBOCYTOPENIA (ITP) |
|
|
ITP Society Children's Blood Foundation 333 E. 38th St., Rm. 830 New York, NY 10016-2745 (800) 487-7010 (ITP Hotline) (212) 297-4336 (office) (212) 297-4340 (fax) cbf@nyp.org |
-Wiskott-Aldrich Syndrome -Werlhof Disease |
|
RASMUSSEN SYNDROME |
|
|
Rasmussen's Syndrome and Hemispherectomy Support Network Lynn/Al Miller: co-founders 8235 Lethbridge Rd. Millersville, MD 21108 (410) 987-5221 (voice) rssnlynn@aol.com |
|
|
REFLEX SYMPATHETIC DYSTROPHY SYNDROME |
|
|
Reflex Sympathetic Dystrophy Syndrome Association of America 116 Haddon Ave, Ste. D Haddonfield, NJ 08033 (856) 795-8845 (voice/fax) jwbroatch@aol.com |
-Sudeck Atrophy -Algoneurodystrophy |
|
RESPIRATORY PAPILLOMATOSIS, RECURRENT |
|
|
Recurrent Respiratory Papillomatosis Foundation PO Box 6643 Lawrenceville, NJ 08648-0643 (609) 530-1443 (609) 530-1912 (fax) rrpf@rrpf.org |
|
|
RETINITIS PIGMENTOSA |
|
|
Retinitis Pigmentosa International PO Box 900 Woodland Hills, CA 91364 (800) 344-4877 (818) 992-0500 (818) 992-3265 (fax) RPINT@pacbell.net http://www.rpinternational.org RP Research Foundation Fighting Blindness c/o Sharon Cole or Margot Alward 60 St Claire Ave East St 703 Toronto, ON CAN M4T-1N5 (800) 461-3331 (Canada only) (416) 360-4200 (416) 360-0060 (fax) The Foundation Fighting Blindness Mitsy Palmer: Constituent Services Coordinator & Edy Asbell: Constituent Services Representative 11435 Cronhill Dr. Owings Mill, MD 211117-2220 (888) 394-3937 (800) 683-5551 (Toll Free TDD) (410) 568-0150 (410) 363-7139 (local TDD) (410) 363-2393 (fax) info@blindness.org http://www.blindness.org |
-Stargardt Disease |
|
RETINOBLASTOMA |
|
|
National Retinoblastoma Parent Group PO Box 317 Watertown, MA 02471 (800) 562-6265 (617) 972-7444 (fax) |
|
|
RETT SYNDROME |
|
|
International Rett Syndrome Association Kathy Hunter Parent: Founder and President 9121 Piscataway Rd. Clinton, MD 20735 (301) 856-3334 (301) 856-3336 (fax) khunter@rettsyndrome.org Ontario Rett Syndrome Association 147 Westdale Rd. Oakville, ON CAN L6L 4Z7 (905) 844-7673 (905) 884-8730 (fax) rettsyndromeontario@home.com http://www.members.home.net/rettsyndromeontarioRett Syndrome Research Foundation 4600 Devitt Dr, Cincinnati, OH 45246 (513) 874-3020 (513) 874-2520 (fax) http://www.rsrf.org |
|
|
ROBINOW SYNDROME |
|
|
Robinow Syndrome Foundation c/o Karla M. Kruger PO Box 1072 Anoka, MN 55303 (763) 434-1152 (763) 434-3691 (fax) kmkrruger@qwest.net |
|
|
RUBINSTEIN-TAYBI SYNDROME |
|
|
Rubinstein-Taybi Parent Group c/o Lorrie Baxter PO Box 146 Smith Center, KS 66967 (888) 447-2989 (785) 697-2989 (785) 697-2985 (fax) lbaxter@ruraltel.net |
|
|
RUSSELL-SILVER SYNDROME |
|
|
The Magic Foundation Russell-Silver Support Group 1327 N. Harlem Ave. Oak Park, IL 60302 (800) 3-Magic-3 (362-4423) (708) 383-0808 (708) 383-0899 (fax) mary@magicfoundation.org |
-Silver-Russell Syndrome -Silver Syndrome |
|
SCLERODERMA |
|
|
Scleroderma Foundation, Inc. 12 Kent Way, Ste. 101 Byfield, MA 01915 (800) 722-HOPE (4673) (978) 463-5843 (978) 463-5809 (fax) sfinfo@scleroderma.org Scleroderma Research Foundation PO Box 200 Columbus, NJ 08022 (800) 637-4005 (609) 723-7400 |
|
|
SCOLIOSIS |
|
|
National Scoliosis Foundation 5 Cabot Pl. Stoughton, MA 02072 (800) NSF-MYBACK (673-6922) (781) 341-6333 (781) 341-8333 (fax) NSF@scoliosis.org |
|
|
SEIZURE DISORDERS |
|
|
THRESHOLD--Intractable Seizure Disorder Support Group & Newsletter Epilepsy Foundation of NJ Lion Head Office Park., Ste. 8A 35 Beaverson Blvd. Brick, NJ 08723 (800) FSC-NJ10 (372-6510) (732) 262-8020 (732) 262-4373 (fax) fsnj@aol.com |
|
|
SEPTO-OPTIC DYSPLASIA |
|
|
FOCUS: For Our Children's Unique Sight 2453 Emerald St. San Diego, CA 92109 (866) FOCUS50 (362-8750) (858) 273-1473 support@focusfamilies.org |
|
|
SHORT STATURE |
|
|
Little People of America PO Box 65030 Lubbock, TX 79464-5030 (806) 797-8830 (voice/fax; call first) Engl./Span. (888) 572-2001 (voice/fax; call first) lpadatabase@juno.com |
-Skeletal Dysplasia |
|
SHWACHMAN SYNDROME |
|
|
Shwachman Diamond Syndrome, Intl. c/o Nancy Ruick 5195 Hampsed Village Center Way, PMB #162 New Albany, OH 43054-8331 1-877-SDS INTL (737-4685) (614) 939-0752 (fax) 4Sskids@shwachmandiamond.org |
-Shwachman-Diamond Syndrome- |
|
SHY-DRAGER/MULTIPLE SYSTEM ATROPHIES |
|
|
Shy-Drager Sydrome MSA Support Group 2004 Howard Ln. Austin, TX 78728 (866) 737-4999 (512) 251-3315 (fax) |
|
|
SICKLE CELL DISEASE |
|
|
Sickle Cell Disease Association of America 200 Corporate Pointe, Ste. 495 Culver City, CA 90203-8727 (800) 421-8453 (310) 216-6363 (310) 215-3722 (fax) scda@sicklecelldisease.org http://www.sicklecelldisease.org Sickle Cell Disease Association of the Piedmont PO Box 20964 Greensboro, NC 27420 (800) 733-8297 (336) 274-1507 (336) 275-4251 (fax) scdap@aol.com http://www.scdap.org |
-Sickle Cell Anemia |
|
SMITH-LEMLI-OPITZ SYNDROME |
|
|
Smith-Lemli-Opitz (RSH) Advocacy & Exchange 2650 Valley Forge Dr. Boothwyn PA 19061 (610) 485-9663 (419) 781-3317 (fax) bhook@erols.com |
-SLO Syndrome |
|
SMITH-MAGENIS SYNDROME |
|
|
PRISMS (Prents and Researchers Interested in Smith-Magenis Syndrome) Connie Bessette: President 76 south New Boston Rd. Francestown, NH 03943-3511 (603) 547-8384 (603) 547-3043 (fax) info@smithmagenis.org |
|
|
SOTOS SYNDROME |
|
|
Sotos Syndrome USA Support Association 3 Danada Sq. E. PMB #235 Wheaton, IL 60187 (888) 246-SSSA (7772) (630) 682-8815 (international) sssa@well.com |
|
|
SPINA BIFIDA |
|
|
Spina Bifida Association of America 4590 MacArthur Blvd. NW, Ste. 250 Washington, DC 20007-4226 (800) 621-3141 (202) 944-3285 (202) 944-3295 (fax) sbaa@sbaa.org Spina Bifida and Hydrocephalus Association of Canada #997-167 Lombard Ave., Winnipeg, MB CAN R3B OV6 (800) 565-9488 (Canada only) (204) 925-3650 (204) 925-3654 (fax) spinab@mts.net http://www.sbhac.ca |
|
|
SPINAL CORD INJURIES |
|
|
Christopher and Dana Reeve Paralysis Resource Center 636 Morris Turnpike, Ste 3A Short Hills, NJ 07078 (800) 539-7309 (973) 467-8270 (973) 467-9845 (fax) prc@crpf.org National Spinal Cord Injury Association 6701 Democracy Blvd., Ste. 300 Bethesda, MD 20817 (800) 962-9629 (hotline only) (301) 588-6959 (301) 588-9414 (fax) info@spinalcord.org resource@spinalcord.org http://www.spinalcord.org |
|
|
SPINAL MUSCULAR ATROPHY |
|
|
Families of SMA PO Box 196 Libertyville, IL 60048-0196 (800) 886-1762 (847) 367-7620 (847) 367-7623 (fax) info@fsma.org Muscular Dystrophy Association Bob Mackle, Director of Public Information 3300 E. Sunrise Drr 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 N. Meridian St. Indianapolis, IN 46208-5730 (800) 544-1213 (317) 923-MDFF (6333) mdff@mdff.org http://www.mdff.org |
-Werdnig-Hoffman Disease |
|
STICKLER SYNDROME |
|
|
Stickler Involved People (SIP) 15 Angelina Dr. Augusta, KS 67010 (316) 775-2993 sip@sticklers.org |
|
|
STROKE |
|
|
National Stroke Association 9707 E. Easter Ln. Englewood, CO 80112-5112 (800) 787-6537 (303) 649-9299 (303) 649-1328 (fax) info@stroke.org Heart and Stroke Foundation of Canada 222 Queen St. Ste 1402 Ottawa, ON CAN K1P 5V9 (613) 569-4361 (888) HSF-INFO (473-4636) (613) 569-3278 (fax) http://www.heartandstroke.ca http://www.fmcoeur.ca |
|
|
STURGE-WEBER SYNDROME |
|
|
Sturge-Weber Foundation Carol Buck, VP, Admin Research PO Box 418 Mount Freedom, NJ 07970 (800) 627-5482 (927) 895-4445 (927) 895-4846 (fax) swf@sturge-weber.com Sturge-Weber Foundation (Canada) Inc 1960 Prairie Ave. Port Coquitlam, BC CAN V3B 1V4 (604) 942-9209 (604) 942-6429 (fax) kmoore@axionet.com http://www.inforamp.net/~cvs0590 |
-Weber-Syndrome -Vascular Malformations |
|
STUTTERING |
|
|
Speak Easy c/o Mike Hughes 95 Evergreen Ave. St John, NB CAN E2N 1H4 (506) 696-6799 (voice/fax) (800) 345-9022 (voice/fax) info@speakeasycanada.com http://www.speakeasycanada.com Stuttering Foundation of America PO Box 11749 Memphis, TN 38111-0749 (800) 992-9392 (901) 452-7343 (901) 452-3931 (fax) stutter@stutteringhelp.org http://www.stutteringhelp.org |
-Speech Disorders |
|
SUBACUTE SCLEROSING PANENCEPHALITIS |
|
|
National Institute of Neurological Disorders & Stroke (NINDS) PO Box 5801 Betthesda, MD 20824 (800) 352-9424 (301) 496-5751 (301) 402-2186 (fax) braininfo@ninds.nih.gov National Organization for Rare Disorders (NORD). 55 Kenosia Ave. Danbury, CT 06810 (800) 999-6673 (203) 744-0100 (203) 797-9590 (TDD) (203) 798-2291 (fax) orphan@rarediseases.org http://www.rarediseases.org |
- SSPE |
|
SUDDEN INFANT DEATH SYNDROME (SIDS) |
|
|
Canadian Foundation for the Study of Infant Deaths 586 Eglinton Ave E., Ste. 308 Toronto, ON Canada M4P 1P2 (800) 363-7437 (Canada only) (416) 488-3260 (416) 488-3864 (fax) sidsinfo@sidscanada.org http://www.sidscanada.org/sids National Sudden Infant Death Syndrome Resource Center 2070 chain Bridge Rd., Ste. 450 Vienna, VA 22182 (703) 821-8955 (703) 821-2098 (fax) sids@sidscenter.org http://www.sidscenter.org |
-SIDS |
|
SYRINGOMYELIA |
|
|
ASAP: American Syringomyelia Alliance Project PO Box 1586 300 Green Stt., Ste. 206 Longview, TX 75606-1586 (800) 272-7282 (903) 236-7079 (903) 757-7456 (fax) info@asap4sm.org |
-Syringobulbia |