SUPPORT GROUPS—CHROMOSOMAL DISORDERS
Please note—The information listed here comes from many sources. Please check individual groups for suitability for your family’s needs.
General Chromosomal Disorders
Chromosome Disorder Outreach
888-236-6880, 561-395-4252
PO Box 724
Boca Raton, FL 33429-0724
UNIQUE: Rare Chromosome Disorder Support Group
44-(0)1883-330766
PO Box 2189
Caterham Surrey CR3 5GN
England
Caring, Inc.
206-922-8607
PO Box 400
Milton, WA 98354
Support Group for Chromosomal Conditions
www.kumc.edu/gec/support/chromoso.html
Lists of support groups
SWAN—Syndromes Without A Name USA
888-880-7926, 269-692-2090
1745 Lorna Lane
Otsego, Michigan 49078
Offers support, advice, and information on the challenges that families face when there is no diagnosis.
Chromosome 4—Wolf Hirschhorn Syndrome
4p-Support Group
360-577-9033
3585 Taylor
Longview, WA 98632
New parent/member information, newsletters, listserv, biographical information exchange, contacts
Wolf-Hirschhorn Guidebook
UNMC
402-559-7467
600 S. 42nd Street
PO Box 985450
Chromosome 5—Cri Du Chat
5p-Society
913-469-8900
11609 Oakmont
Overland Park, KS 66210
Cri Du Chat Support Group of Australia
5 Connal Drive
Frankston, VIC 3199
Chromosome 7
Chromosome 7 Information
The Hospital for Sick Children
Department of Genetics Room 9102
555 University Avenue
Toronto, Ontario M5G 1X8
Canada
www.genet.sickkids.on.ca/chromosome7
Williams Syndrome
Williams Syndrome Changing Lives Foundation
727-557-7177
https://www.facebook.com/WilliamsSyndromeChangingLivesFoundation
Williams Syndrome Support
www.facebook.com/groups/williamssyndromesupport
Facebook support group page for parents and caregivers of children with Williams Syndrome
Chromosome 8
8p Duplication Support Group
937-641-5645 (Faith Callif-Daley)
Genetics Center, Children’s Medical Center
1 Children’s Plaza
Daytona, OH 45404
Trisomy 8 Informal Support Group
Geocities
A website with information about Trisomy 8 as well as a support group network.
Chromosome 9
Chromosome 9p Network (merger of support groups for Monosomy 9 & 9p)
435-574-1121
393 N. Grass Valley Road
Pine Valley, UT 84781
Bill & Alice Todd
909-862-4470
4027 E. Piedmont Dr.
Highland, CA 92346
Chromosome 10
Distal Trisomy 10q Families
541-754-8518
The Distal Trisomy 10q Families are a support web site for families of children with distal trisomy 10q. The primary objectives are: 1) Provide a registry of children and families with 10q so that families can contact each other. 2) Provide a place where families can submit information on their children and experiences. 3) Provide links to related web sites. 4) Provide links to related web sites.
Chromosome 11
International 11:22 Translocation Network
see c22c below
11q Research and Resource Group
804-863-2114
6123 A. Duncan Road
Petersburg, VA 23803
European Chromosome 11q Network
Annet Van Betuw
Else Mauhsstraat 7,
6708 NJ Wageningen,
Netherlands
Materials in Dutch, English, German, Italian, and Scandinavian.
Chromosome 11 Deletion/WAGR Syndrome Support Group
2063 Regina
Lincoln Park, MI 48146
Chromosome 13—Patau Syndrome & Others
SOFT—Support Organization for Trisomy 18, 13, and others
716-594-4621
2982 S Union Street
Rochester, NY 14624
Annual conferences, literature, newsletter, etc.
SOFT Australia
02-9521-6039
198 Oak Road
Kirrawee NSW 2232
Autralia
Chromosome 13q Deletion
Living With Trisomy 13
Chromosome 15—isodicentric 15 (inverted duplication15), Prader-Willi, Angleman Syndrome
Dup 15q Alliance
877-433-2715
PO Box 674
Fayetteville, NY 13066 USA
Dup15q Alliance provides family support and promotes awareness, research and targeted treatments for Chromosome 15q Duplication Syndrome.
IDEAS—Isodicentric 15 Exchange, Advocacy, and Support
717-225-5229
416 Big Mount Road
Thomasville, PA 17364-9768
Praer-Willi Yahoo Support Groups
http://health.groups.yahoo.com/group/PWSA-USA-0-5yr/
http://health.groups.yahoo.com/group/PWSA-USA-6-12yr/
http://health.groups.yahoo.com/group/HolisticPWS/
Angleman Syndrome—Israel
Chromosome 16
Disorders of Chromosome 16 Foundation
P.O. Box 230448
Encinitas, CA 92023-0448
The Disorders of Chromosome 16 Foundation, formerly the Mosaic Trisomy 16 Registry and Resource Group, is a self-help organization dedicated to providing support and information to families of children with abnormalities of chromosome 16. The foundation, which was established in 1998, serves as a central clearinghouse of information on chromosome 16 disorders for parents and researchers, provides an informational packet consisting of peer-reviewed medical journal articles, and maintains a database on the chromosomal disorder. It is also building a network of individuals who can discuss common problems and concerns encountered by affected individuals, families, friends, and caregivers. In addition, the foundation promotes education of healthcare professionals who may work with affected individuals and families and helps arrange for affected families to assist in research on chromosome 16 abnormalities.
Chromosome 17
PRISMS—Parents & Researchers Interested in Smith Magenis Syndrome
703-709-0568
11875 Fawn Ridge Lane
Reston, VA 22094
www.kumc.edu/gec/support/smith-ma.html
Chromosome 18—Trisomy 18—Edwards Syndrome
SOFT—Support Organization for Trisomy 18, 13, and Others
716-594-4621
2982 S Union Street
Rochester, NY 14624
Annual conferences, literature, newsletter, etc.
Trisomy 18 Foundation
703-878-7013
4491 Cheshire Station Plaza
Suite 157
Dale City, VA 22193
SOFT Australia
02-9521-6039
198 Oak Road
Kirrawee NSW 2232
Autralia
Chromosome 18 Registry & Research Society
210-657-4968
6302 Fox Head
San Antonio, TX 78247
210-657-4968
Chromosome 20
Ring 20 Chromosome Support Group
155 Newell Avenue
St. Clairsville, OH 43950
Chromosome 21 (see also our other listings for Down Syndrome)
Association for Children With Down Syndrome
516-221-4700
2616 Martin Avenue
Bellmore, NY 11710-3169
Down Syndrome Research Foundation & Resource Center
604-431-9694
3580 Slocan Street
Vancouver, BC
Canada V5M 3E8
Canadian Down Syndrome Society
403-253-5825
PO Box 52027
Calgary, T2E 8K9
Canada
Babies With Down Syndrome
www.nas.com/downsyn/welcome.html
For parents of newly diagnosed babies with Down Syndrome, this site provides useful information and links to other sources of support.
National Association For Down Syndrome
PO Box 4542
Oaks Brook, IL 60522-4542
National Down Syndrome Congress
800-232-6372, 404-633-1555
1605 Chantilly
Atlanta, GA 30324-3269
National Down Syndrome Society
800-221-4602, 212-460-9330
666 Broadway
New York, NY 10012-2317
Parent Assistance Committee on Down Syndrome
914-739-4085
208 Lafayette Avenue
Peekskill, NY 10566
International Foundation for Genetic Research
412-Penn Blvd.
Suite 721-Pittsburgh, PA 15235
Chromosome 22-Cat Eye Syndrome, Ring 22, 11;22, 22q Syndromes
Chromosome 22 Central
705-268-3099
237 Kent Avenue
Timmins, ON
Canada P4N 3C2
HEAD OFFICE: Chromosome 22 Central c/o Murney Rinholm
7108 Partinwood Drive, Fuquay-Varina, North Carolina, 27526 USA
Tel (919) 567-8167
EMAIL:
Contact Murney if you have questions about donations or C22C operations.
FOUNDER: Stephanie St-Pierre
Tel: (705) 268-3099
EMAIL:
Contact Stephanie if you want to submit info for our newsletter, advertise an event or research on our website, join our group or connect with families in our database, or have questions about any of the C22 conditions or our group in general.
Latin America / SPANISH INQUIRIES:
Laura Munoz, Robinson Crusoe 1209, Las Condes - Santiago, Chile
tel: 02-3251262 EMAIL: This email address is being protected from spambots. You need JavaScript enabled to view it.
22q13 Deletion Syndrome Foundation
423-778-6279
c/o MC Phelan PhD, Genetic Diagnostic Laboratory
T C Thompson Children’s Hospital
910 Blackford Street, Suite 401 MPB
Chattanooga, TN 37403
International 11;22 Translocation Network
705-268-3099
Stephanie St. Pierre
232 Kent Avenue
Timmins, ON P4N 3C3
Canada
Materials in English, French, German, Dutch, and Spanish.
Klinefelter Syndrome
X & Y Family Genetic Network (Klinefelter syndrome & Associates)
916-773-1449
PO Box 119
Roseville, CA 95678-0119
Turner Syndrome
Turner Syndrome Society of the United States
800-365-9944, 832-249-9988
14450 T C Jester, Suite 260
Houston, TX 77014
Turner Syndrome Foundation
https://turnersyndromefoundation.org/
Turner Syndrome Society of Canada
800-465-6744, 416-781-2086
814 Glencaim Avenue
Toronto, ON M6B 2A3
Canada
Tetrasomy-X / Pentasomy X
Tetrasomy X/ Pentasomy X Support Group
302-764-3924
1402 Governor House Circle
Wilmington, DE 19809
Kim Jenny, Genetic counselor, Cardiology, Children’s Hospital of Philadelphia %20var%20addy80453%20=%20%27kjenny
Online support group