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:

LATIN AMERICAN AND IBERIAN T18 COMMUNITY

Familia Trisomia 18: Spanish T18 Support Group Facebook Site  
Group Efforts:
- Educate on the syndrome,
- Provide Primary Health care guidance,
- Share Experiences with other T18 families,
- Create trisomy-friendly health networks,
- Support grieving families

CONTACTS:
- Chile: Priscila Mutazzi Toledo - Social Work Undergraduate Degree +56 9 9800 9521 arelupi@hotmail.com
- Mexico: Sandra F. Garnica Aguayo - T18 Mother +52 1 348 109 2153 sandraf.garnica@gmail.com
- Argentina: Ivanna Dehollainz - Perinatal Psychologist +54 9 11 4927 -0943 ivipsico@hotmail.com
- Argentina: Nadin Koharic - Certified Technical and Scientific Translator/Interpreter & RN Student  +54 9 299 155 086358 nadine.koharic@gmail.com

Trisomy 13 Facebook Group with some Spanish-speaking members:
https://www.facebook.com/groups/Trisomy13/permalink/10159469495256336/
Español:  Trisomia 13/18 Habla hispana Facebook Group:
https://www.facebook.com/groups/trisomia13hp/
Portuguese:  Sindrome de Patau Brasil - Trissomia 13 Facebook Group & website:  https://www.facebook.com/groups/1446054915642338/
https://www.facebook.com/sindromedepataubrasil/
Portuguese:  Sindrome Edwards y Patau - Trissomia 18/13 Facebook Group:
https://www.facebook.com/groups/1956241547921792/

Australia:

SOFT  Australia
David & Tracey Pass
3479 Nelson Bay Road
Bobs Farm, 2316 NSW, Australia
Ph: 0407 820560 or 0418 479623
Website:  www.soft.org.au
Email: softaustralia@gmail.com
Facebook:  SOFT Australia

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:

Associazione SOFT Italia
Via Cal del poz, 26
Farra di Soligo (TV) 31010, Italia
Pagina ufficiale Facebook: @trisomia13e18
Gruppo Facebook: "Trisomie 13 e 18 gruppo d'aiuto - SOFT Italia"
https://m.facebook.com/groups/552468538109828/?ref=group_browse
Contact by email: soft.italia.info@gmail.com
www.trisomia.org
Telefono +39 3701346848
Presidente: Gianstefano Folgoni

Japan:  The Trisomy 18 Support Group

 

 

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