Partners · Other · International

PARTNERS

Children’s Craniofacial Association

Genetic Alliance

Global Genes

myFace, the new face of the NFFR

National Organization for Rare Disorders – NORD

Positive Exposure – thank you to Rick Guidotti, founder of Positive Exposure, for the majority of photos on the Moebius Syndrome Foundation Website!

OTHER ORGANIZATIONS

Ameriface

American Association of People with Disabilities

Autism Speaks

Center for Parent Information and Resources (formerly NICHY)

Cleft Lip & Palate Foundation of Smiles

Cleft Palate Foundation

Craniofacial Foundation of America

EP Magazine

Everylife Foundation For Rare Diseases

FACES: The National Craniofacial Association

Facial Paralysis and Bell’s Palsy Foundation

Family Voices, Inc.

Foundation for Faces of Children

Many Faces of Moebius Syndrome

National Association of Councils on Developmental Disabilities

National Organization on Disability

PACER Center, Inc. – Minnesota Parent Training and Information Center

RareConnect

INTERNATIONAL ORGANIZATIONS

AboutFace Canada

Moebius Research Trust

Rare Disease UK 

EURORDIS – Rare Diseases Europe

INTERNATIONAL MOEBIUS SYNDROME GROUPS

Argentina
Alejandra Alegre
alejandraxs@hotmail.com

Australia
Moebius Syndrome Foundation of Australia
Karin Thompson
kthompson9@bigpond.com
http://kidswithfacialparalysis-moebiussyndrome.webs.com/

Brazil
Support Group
Liana Ventura, MD
5581332050903
venturaliana@hotmail.com
Boneto Reinaldo
moebius@moebius.org.br
proseg2@uol.com.br
www.moebius.org.br

Belgium
ASBL Syndrome Moebius Belgique
Kaiser Christophe
www.syndromemoebius.be
contact@syndromemoebius.be

Colombia
Norma Hincape
mgarciber@yahoo.com

Denmark
Danish Moebius Syndrome Organisation
Bo Krogh Nielsen
ibbo@email.dk

England
Becky Deas
rebecca.deas@talk21.com

France
l’Association Syndrome Moebius France
info@moebius-france.org+(33) 6-64-36-06-45
http://www.moebius-france.org

Germany
Moebius Syndrom Deutschland e. V.
49 0 511 98453 55
www.moebius-syndrom.de
falco.schleier@googlemail.com

Holland
Support Group
Ben van Zanten, President
31 0 40 2800559
Ben@van.Zanten.name
info@moebiussyndroom.nl

Indonesia
Support Group
Andreas Kurniawan
ndreamon@yahoo.com

Israel
Support Group
Hella Edvi
04-6401595
hedvid@zahav.net.il

Italy
Associazione Italiana Sindrome di Moebius Onlus
Renzo DeGrandi
039 2726229
FAX 039 2724931
archi0713@hotmail.com
www.moebius-italia.it

Korea
Korea Moebius Syndrome Support Group
Meehyun Jin
#220-704
Munjung-Dong
Seoul, Korea
suzanne55@slingshot.co.nz
http://m.cafe.naver.com/mobiussyndrome

Mexico
Dr. Arianel Amador Lara.
aryamadorlara@hotmail.com 

New Zealand
Support Group
Suzanne Woon
Hastings, New Zealand
suzanne55@slingshot.co.nz

Peru
Moebius Peru
Carlos Sanchez, President
Phone: 984-793143
http://www.moebiusperu.com
moebiusperu@gmail.com

Philippines
Philippines Support Group
Wennie O. Estrada
09157286544
09228822041
westrada_2006@yahoo.com

South Africa
Support Group
Kay Von Willingh
27 21 862 6902
kay@moebiussyndrome.co.za
http://www.moebiussyndrome.co.za/

Spain
Fundacion Sindrome de Moebius de España
Tel: 655 19 02 15
info@moebius.org
www.moebius.org

Sweden
Support Group
www.mobiusyndrom.se
Anette Book anette.book@hotmail.se (president)
and Torbjorn Johansson torbjorn@tjft.se (treasurer)