Moebius Syndrome Foundation

Partner and International Organizations

The Moebius Syndrome Foundation works with various facial difference and disability organizations around the world. The Foundation has 8 key partners: American Cleft Palate Craniofacial Association (ACPA), Children’s Craniofacial Association (CCA), Face Equality International, Genetic Alliance, Global Genes, myFace, National Organization for Rare Disorders (NORD), and Positive Exposure.

Partner Organizations

American Cleft Palate Craniofacial Association (ACPA)

The American Cleft Palate Craniofacial Association (ACPA) is the premier scientific resource and interdisciplinary professional network for healthcare providers serving patients with cleft lip, cleft palate, and craniofacial differences.

Children's Craniofacial Association

CCA addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions.

Face Equality International

Face Equality International is an alliance of Non-governmental Organizations (NGOs), charities and support groups which are working at national, regional, or international levels to promote the campaign for “face equality.”

Genetic Alliance

Genetic Alliance partners with individuals and communities to transform health systems to respond to what people most need.

Global Genes

This organization provides hope for the more than 400 million people affected by rare diseases around the globe. It helps patients find the resources they need to become effective advocates on their own behalf.

MyFace

MyFace provides access to holistic comprehensive care, education, resources, and support that pave the way for better outcomes for children and adults with facial differences.

National Organization for Rare Disorders (NORD)

NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.

Positive Exposure

This organization promotes a more inclusive world through award-winning photography, films, exhibitions, lectures, and educational programs.

Thank you to Rick Guidotti, founder of Positive Exposure, for the majority of the photos on the Moebius Syndrome Foundation website!

Auxiliary Organizations

International Moebius syndrome Organizations

Click + for more information

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

Colombia

Norma Hincape
mgarciber@yahoo.com

Denmark

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

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

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
info@moebius-italia.it
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 

The Netherlands

Peter Mul

President of the Dutch Moebius Foundation

Peter.Mul@MoebiusSyndroom.nl

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)

United Kingdom