S
Scleroderma
Please note: Scleroderma can affect any part of the
body.
The Scleroderma Research Foundation
- People Served: Individuals dealing with scleroderma
- Services provided: Networking, support, and advocacy
- Address: Pueblo Medical Commons, 2320 Bath Street,
Suite 307, Santa Barbara CA 93105
- Phone number: 1-800-441-CURE
- Email Address: srfcure@srfcure.org
- Website: http://www.srfcure.org/
United Scleroderma Foundation
- People Served: Individuals dealing with scleroderma
- Services provided:
- Offline: Conferences, Chapters and Support Groups,
Literature,
- Online: links and chats on AOL
- Street Address: 734 E Lake Avenue, Suite 5, Watsonville
CA 95077
- Mailing Address: PO Box 399, Watsonville CA 95077
- Phone number: 1-800-722-HOPE
- Email Address: outreach@scleroderma.com
- Website: http://www.scleroderma.com/
Septo-optic Dysplasia
Please note: Septo-optic dysplasia can occur with
craniofacial anomalies.
Septo-optic Dysplasia Support Group
Short Stature/Dwarfism
Quebec's Association of Persons of Short Stature
(Canada)
- People served: Individuals and families dealing
with dwarfism or short stature
- Services provided: Support
- Address: 1251 rue Robin, Montreal, QC H2L 1W8 CANADA
- Phone number: (514) 521-9671
The Human Growth Foundation
- People served: Individuals and families fealing
with short stature
- Services provided: Support of research, family education
and service, public education, support of training for growth specialists,
and education of the medical profession
- Address: 7777 Leesburg Pike, Suite 202, South Falls
Church VA 22043
- Phone number: 1-800-451-6434
- Email address: hgfound@erols.com
- Website: http://www.genetic.org/hgf/
Billy Barty Foundation
- People served: Individuals and families dealing with
dwarfism
- Services provided: Education and advocacy
- Address: 929 W. Olive Avenue Suite C, Burbank CA
91506
- Phone number: (818) 953-5410
Little People of America
- People served: Individuals and families dealing
with dwarfism
- Services provided: Information and referral, support
for parents, peer counseling for teens, chapters throughout the U.S., online
resources, and newsletter
- National Headquarters - P.O. Box 9897, Washington DC
20016
- Phone number: 1-888-LPA-2001
- Email address: npeterson@ucsd.edu
- Website: http://www-bfs.ucsd.edu/dwarfism/lpa.htm
Little People of America - Parents' Committee
- People served: Parents of children dealing with
dwarfism
- Services provided: Information and support
- Address: 3010 Olympia Way, Longview WA 98632
- Phone number: (360) 636-0276
- BBS/fax: (360) 578-1948
- Contact people: Rob and Betty Jacobsen
- Email address: jacobsen@aone.com
Little People of America - Parents' Forum
- People served: Individuals and families dealing
with dwarfism
- Services provided: Information, support, and online
and offline resources
- Contact people: Nancy and John Mayeux
- Email address: jmayeux@gte.net
- Website: http://home1.gte.net/jmayeux/pf1/index.htm
The Little People of New Zealand
- People served: Individuals and families dealing
with dwarfism
- Services provided: Support and information
- Address: 108 Mayfair Ave., Hastings, New Zealand
Little People of Ontario
- People served: Individuals and families dealing
with dwarfism
- Street address: 4841 Yonge Street, Toronto ON CANADA
- Postal Address: P. O. Box 43072, Toronto ON M2N 6N1 CANADA
The MAGIC Foundation
- People served: Individuals and families dealing
with short stature caused by medical problems
- Services provided: Education, information, local
support groups, newsletters for parents and children, Parent Help Line,
pen pals for children, and public awareness
- Address: 1327 N. Harlem Avenue, Oak Park IL 60302
- Phone number: (708) 383-0808
- Email address: mary@magicfoundation.org
- Website: http://www.magicfoundation.org/
Parents of Dwarfed Children
- People served: Parents of children with dwarfism
- Services provided: Support and information
- Address: 11524 Colt Terrace, Silver Spring MD 20902
- Phone number: (301) 649-3275
- Contact person: Margaret B Badner
Short Stature Foundation
- People served: Individuals and families dealing
with dwarfism and short stature
- Services provided: Support, information and referral,
and advocacy
- Address: 17200 Jamboree Rd, Suite "J",
Irvine CA 92714-5828
- Phone number: 1-800-243-9273
- Contact person: Rich Crandall
Shprintzen Syndrome/Velo-Cardio-Facial Syndrome/Di
George Syndrome/
See: Velo Cardio Facial Syndrome
Smith-Lemli-Opitz/RSH Syndrome
Smith-Lemli-Opitz/RSH Syndrome
- People served: Individuals and families dealing
with Smith-Lemli-Opitz/RSH syndrome
- Services provided: Informal networking, newsletter, national
meetings
- Address: 1198 Rebel Hill Rd, Gulph Mills PA 19428
- Phone number: (610) 828-4647
- Contact person: Pam Scott (for donations and more
information)
- 32 Ivy Lane, Glen Mills PA 19342
- Phone number: (610) 361-9663
- Email address: uylv85a@prodigy.com
- Contact person: Barbara Hook (for membership information,
family support or to contact the medical advisory board)
- Email address: bhook@erols.com
- Website: http://members.aol.com/slo97/
Smith-Magenis Syndrome
Smith-Magenis Syndrome Contact Group (United Kingdom)
- People served: Individuals and families dealing
with Smith-Magenis Syndrome
- Services provided: Support and information
- Address: 52 Ladeside Close, Newton Mearns, Glasgow
Scotland G77-6TZ
PRISM (United States)
- People served: Individuals and families dealing with
Smith-Magenis Syndrome
- Services provided: Support, information, registry,
and printed materials
- 11875 Fawn Ridge Ln., Reston VA 22094
- Phone number: (703)709-0568
- Contact Person: Ann C.M. Smith, MA
- Email address: acmsmith@nhgri.nih.gov
Sotos Syndrome
Please note: People with Sotos Syndrome have craniofacial
anomalies that do not require reconstructive surgery.
Sotos Syndrome Support Group (Australia)
- People served: Individuals and families dealing
with Sotos Syndrome
- Services provided: Support and information
- Email address: cjparker@ozemail.com.au
The Eltern-Initiative Sotos-Syndrom [EISS] (Germany)
Sotos Syndrome Support Association
- People served: Individuals and families dealing
with Sotos Syndrome
- Services provided: Networking resources, publications,
bibliography, annual conferences, and newsletter
- Address: Three Danada Square East, #235, Wheaton
IL 60187
- Phone number: 1-888-246-SSSA or 1-888-246-7772 (USA
and Canada only) or (630) 682-8815 (International)
- Email Address: sssa@well.com
- Website: http://www.well.com/user/sssa/index.html
Sotos Syndrome Support Association of Canada
- People served: Individuals and families dealing
with Sotos Syndrome
- Services provided: Networking resources, publications
- Address: 1944 Dumfries, Montreal, Quebec, H3P
2R9
- Email Address: info@sssac.com
- Website: http://www.sssac.com/
Spina Bifida
Please note: Cleft lip and/or palate can occur with
spina bifida.
Spina Bifida and Hydrocephalus Association of South
Australia
- People served: Individuals and familes dealing with
spina bifida and hydrocephalus
- Services provided: Information and referral, counseling,
financial assistance, and practical assistance, and support groups
- Address: 9
Kensington Road
NORWOOD
South
Australia
5067
- Phone number: +61
8 8366 5900
- Fax:
+61 8 8366 5901
- Email address:
info@spinabifida.asn.au
- Website: http://www.spinabifida.asn.au/
The Queensland Association for People with Spina Bifida
or Hydrocephalus (Australia)
- People served: Individuals and families dealing
with spina bifida and/or hydrocephalus
- Services provided: Information and support, camps,
networking, playgroups, counseling, advocacy, and newsletter
- Website: http://www.spinabifida.org/
Spina Bifida Association of Canada (SBAC)
- People served: Individuals and families dealing
with spina bifida
- Services provided: Information, referrals, local
support groups, and brochures
- Address: 220-388 Donald Street Winnipeg, Manitoba,
Canada R3B 2J4
- Phone number: (204) 957-1784
Spina Bifida and Hydrocephalus Association of Canada
- People served: Individuals and families dealing
with spina bifida and hydrocephalus
- Services provided: Information and referral and
support
- Email address: spinab@mts.net
- Website: http://www.sbhac.ca/
Scottish Spina Bifida Associtation
Association for Spina Bifida and Hydrocephalus
(United Kingdom)
- People served: Individuals and families dealing
with spina bifida and/or hydrocephalus
- Services provided: Information and referral, support,
and advocacy
- Address: 42 Park Road Peterborough PE1 2UQ England
- Phone number: 01733 555988
- Email address: postmaster@asbah.demon.co.uk
- Website: http://www.asbah.demon.co.uk/
Spina Bifida Association of America (SBAA) (United
States)
- People served: Individual and families dealing with
spina bifida
- Services provided: Information, referrals, chapters
throughout the country, and bi-monthly newsletter
- Address: 4590 McArthur Blvd., NW, Suite 250, Washington
DC 20007-4226
- Phone numbers: 1-800-621-3141 or (202) 944-3285
- Email address: spinabifda@aol.com
Stickler's Syndrome
Dave Hawley's Stickler Syndrome Page (Internet)
Canadian Chapter of Stickler Involved People
- People served: Individuals and families dealing
with Stickler Syndrome
- Services provided: Support, information, and newsletter
- Address: 190 Duke of Kent, Pointe-Claire
QC
H9R 1Y3
- Contact persons: Barb Lockey and Joe Shea
- Email address:
lockey-shea@canada.com
- Website: http://home.ican.net/~17976/
The Stickler Syndrome Support Group (United Kingdom)
- People served: Individuals and families dealing
with Stickler Syndrome
- Services provided: Support and information
- 27 Braycroft Avenue, Walton-on-Thames, Surrey, KT12 2AZ
- Phone number: 44+01932-229421
- Contact Person: Wendy Hughes
Stickler Involved People (United States)
- People served: Individuals and families dealing
with Stickler Syndrome
- Services provided: Support, networking, newsletter,
medical information
- Address: 53 Angelina, Augusta KS 67010
- Phone number: (316) 775-2993
- Contact people: Bill and Pat Houchin
- Email address:
sip@sticklers.org
- Website:
http://www.sticklers.org
Sturge-Weber Syndrome
The Sturge-Weber Foundation
- People Served: Individuals and Families dealing
with Sturge-Weber Syndrome, Klippel-trenaunay Weber and Port-Wine Stain
- Services: Printed materials, current events/news,
listserv, IRC chats, and online resources
- Contacts:
- International and US Contact:
- Address: P.O. Box 418, Mount Freedom, NJ 07970
- Phone number: 1-800-627-5482 (US) or (973) 895-4445
- Canada:
- Address: 1960 Prairie Avenue, Port Coquitlam, BC
V3B 1V4
- Phone number: (604) 942-9209
- United Kingdom:
- Burleigh, 348 Pinhoe Road, Exeter EX4 8AF
- Phone number: (01392) 464675
- Email address: SWF@pobox.com
- Website: http://www.avenza.com/~swf/page2.htm
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