Other Trisomy Support Groups

International Support Groups

Links to Other Trisomy 18 or Trisomy 13 Support Groups (USA)

This page provides links to other trisomy 18 and trisomy 13 support groups.   Provision of information and links does not constitute SOFT’s endorsement of any group.   Please report any broken links to Website Content Manager.

♥ The Chromosome 18 Registry and Research Society  is a non-profit advocacy organization for parents of individuals with a chromosome 18 abnormality.   Email:  jmcging@dm.net

   www.livingwithtrisomy13.org    redirects to a Facebook Page, and Group, which are dedicated to assisting families of children with Trisomy 13.

  Hope for Trisomy  is a non-profit organization for Trisomy 13, 18, related conditions & rare trisomies.   Email:  ahauber@trisomyhelp.org

Links to Related Chromosome Disorder Groups:

Chromosome 2
http://noahsneverendingrainbow.org/

Chromosome 3q Disorder Registry family information and support
Website:   http://chromosome3disorder.com/

4P- Support Group (Wolf-Hirshorn Syndrome)
Website: www.4p-supportgroup.org
Wolf-Hirshhorn Syndrome, Deletion 4P, A Guidebook for Families , Schaefer et al,  1996
Christine Kleimola, SOFT member, initiated and helped write this book.
Ypsilanti, MI
Phone: 734-482-4027
Email: chriskleimola@sbcglobal.net

Chromosome 8
Judy Miller
Coralville, IA
Phone: 319-337-2608
Email: Vamjam1@mchsi.com

Trisomy 9, Trisomy 9 mosaic
(9TIPS) Trisomy 9  International Parent Support Group

9TIPS is an international support group for trisomy 9, covering all variations.
Website: www.trisomy9.org/9tips.htm
Alice Todd
Highland, CA
Phone: (909) 862-4470
Email:  BTODD@roadrunner.com

Trisomy 10:   Distal Trisomy 10q Families support group.  This website has existed for about 17 years, but has been upgraded recently, and moved to a new domain:   URL: http://trisomy10q.org
email: info@trismoy10q.org

Trisomy 13:  See SOFT website main menu:  Resources>Other Support Groups> Other Trisomy 18 & 13 Support Groups

Trisomy 14:  https://www.facebook.com/Trisomy14awareness

The Chromosome 18 Registry and Research Society  is a non-profit advocacy organization for parents of individuals with a chromosome 18 abnormality.   The web site contains a description of “conditions” related to trisomy 18, such as mosaic, partial trisomy and translocation and much more.
Email: jmcging@dm.net

Chromosome 22 Central
Stephanie St Pierre
Timmons, Ontario, Canada
Phone:  (705) 268-3099

Smith/Lemli/Opitz Syndrome (SLOS)
Margaret and Jim Thompson
Richardson, Tx
Phone: (972) 234-8788
Email: jmgthompson@att.net

National Organization for Rare Disorders (NORD) a 501(c)(3) organization, is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases.
Website: http://www.rarediseases.org

Office of Rare Disorders at the National Institutes of Health, at: http://rarediseases.info.nih.gov/

Genetic and Rare Diseases Information Center (GARD) http://rarediseases.info.nih.gov/GARD/

DiseaseInfoSearch, for information on specific genetic conditions, at: http://www.geneticalliance.org/
S
upport Groups for Chromosomal Conditions
:
 Contact information for many specific disorder support groups.   www.kumc.edu/gec/support/chromoso.html

The Children’s Rare Disease Network, at: http://www.crdnetwork.org/

The Rare Blog, at:  http://www.crdnetwork.org/blog/

International Trisomy Support Groups and Contacts

Provision of information and links does not constitute SOFT USA’s endorsement of any group.  Please report any broken links to the Website Content Manager.
 International Support Groups and Contacts
 The International Trisomy 18/13 Alliance   ITA is a volunteer, not-for-profit organization focusing on trisomy 13 and trisomy 18, (also known as Patau and Edwards syndromes respectively).   The mission is to offer trisomy 13 and trisomy 18 support groups, physicians and other professionals, accurate information to enable parents to make informed decisions on behalf of their children, and to be a mechanism for sharing between groups. ITA offers a series of booklets for families, which are offered in a variety of languages.   Click the link above to access these booklets.  Here are cover photos of the booklets:
ITA A Family Dictionary of Medical Terms
ITA A Cherished Pregnancy
ITA T18, T13 for Younger Children
ITA T18, T13 for Older Children
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SOFT Australia

Australia– SOFT of Australia
David & Tracey Pass
Bobs Farm, NSW, Australia
Ph: 02 48822812
http://members.optushome.com.au/softaus
Email: fishnchips@virginbroadband.com.au

Canada – see the U.S. & Canada Chapter Chair List

France-Valentin APAC
France:
Valentin APAC Association de Porteurs d’AnomalieChromosomiques
(A
ssemblee generale de l’association 16 Fevrier 2016!!)

Germany- LEONA e.V. – Verein für Eltern chromosomal
geschädigter Kinder  http://www.leona-ev.de

Leona e.v. (Germany)

Germany-Trisomie 13-Patau Syndrome
http://www.trisomie13.de/

 

 

 

SOFT IrelandIreland- SOFT for Trisomy 13/18
Carmel Reilly
Phone: 00-353-21-4293623
Contact co-ordinator:  Joanne Mellows
Phone: 1800 213 218
Email: soft.contactme@gmail.com

 

SOFT Italy

 

Italy (Facebook Group page) – SOFT Italia
Contact by email:  softitalia@tiscali.it

 

 

 

 

SOFT - New ZealandNew Zealand
Perry & Kath Newburn
Wanganui, New Zealand
Email: Perry.newburn@xtra.co.nz

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SOFT - NorwayNorway
Website:  www.trisomi18.com
Siri Fuglem Berg MD, PhD
Follingstadsvei 14, N-2819 Gjovik, Norway
Email: sirifberg@gmail.com
Phone:  +47 90 70 10 11

SOFT - RomaniaRomania
New- T13 and T18 in Romania
Website: http://farasastieingeri.wordpress.com
English Translationhttp://www.microsofttranslator.com/BV.aspx?ref=IE8Activity&a=http%3A%2F%2Ffarasastieingeri.wordpress.com%2F


Scotland (2 contacts)

Liz Egan                                                                              Duncan & Fiona Kerr
Uddingston, Scotland                                                    Renfrewshire, Scotland
Phone: 010698-818380                                               Phone: (1505) 614501
Email:  liz_egan40@yahoo.co.uk                             Email: duncanmkerr@aol.com

South Africa
South Africa: A contact point for families affected by Trisomy 18 in South Africa, is found at www.trisomy18.org.za

United Kingdom – Trisomy 18-13 Support  
United KingdomSOFT UK
United Kingdom – Unique,  Understanding Rare Disorders

United States-SOFT USA     SOFT USA also welcomes members from other countries.  The contact for SOFT USA International members is SOFT Board Member Pam Healey.  Email:  healeylex@aol.com