International Support Groups & Contacts

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

SOFT AustraliaAustralia– SOFT of Australia
David & Tracey Pass
Bobs Farm, Australia
Ph: 02 48822812

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

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

Germany- LEONA e.V. – Verein für Eltern chromosomal
geschädigter Kinder

Leona e.v. (Germany)

Germany-Trisomie 13-Patau Syndrome




(note:  is temporarily out of service as of 6/2/17)
Carmel Reilly
Phone: 00-353-21-4293623
Contact co-ordinator:  Joanne Mellows
Phone: 1800 213 218


SOFT Italy


Italy (Facebook Group page) – SOFT Italia
Contact by email:



SOFT - New ZealandNew Zealand
Perry & Kath Newburn
Wanganui, New Zealand


SOFT - NorwayNorway
Siri Fuglem Berg MD, PhD
Follingstadsvei 14, N-2819 Gjovik, Norway
Phone:  +47 90 70 10 11

SOFT - RomaniaRomania
New- T13 and T18 in Romania
English Translation

Scotland (2 contacts)

Liz Egan                                                                              Duncan & Fiona Kerr
Uddingston, Scotland                                                    Renfrewshire, Scotland
Phone: 010698-818380                                               Phone: (1505) 614501
Email:                             Email:

South Africa
South Africa: A contact point for families affected by Trisomy 18 in South Africa, is found at

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: