Provision of information and links does not constitute SOFT USA’s endorsement of any group.

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:

Australia:

SOFT of Australia
David & Tracey Pass
Bobs Farm, NSW, Australia
Ph: 02 48822812
https://members.optushome.com.au/softaus
Send an Email

Brazil:

Associação Síndrome do Amor
Site: http://sindromedoamor.com.br
Address: Doutor Plínio de Castro Prado, 857, Ribeirão Preto, São Paulo, Brasil
e-mail: sindromedoamor@gmail.com
YouTube: youtube.com/trissomia18
Instragram: @sindromedoamor
Facebook: Facebook.com/sindromedoamor
Contact: Marília Castelo Branco
Phone: +55 16 3235-1520
Cell phone and WhatsApp: +55 16 98116-1520

Canada:

See the U.S. & Canada Chapter Chair List

France:

Valentin APAC Association de Porteurs d'AnomalieChromosomiques
(A
ssemblee generale de l'association 16 Fevrier 2016!!)

Germany:

Trisomie 13-Patau Syndrome
https://www.trisomie13.de/
https://www.leona-ev.de

Ireland:

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

Italy:

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

Japan:

The Trisomy 18 Support Group

Spanish-Oriented Facebook Site:

South America, Central America, North America, Spain
This is a Facebook site for any and all Spanish-speaking parents.

 

New Zealand:

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

Norway:

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

Romania:

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

Scotland (2 contacts):

Liz Egan                                                                            
Uddingston, Scotland
Phone: 010698-818380
Email:  liz_egan40@yahoo.co.uk

Duncan & Fiona Kerr
Phone: (1505) 614501
Renfrewshire, Scotland
Email: duncanmkerr@aol.com

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  
SOFT UK
Unique,  Understanding Rare Disorders