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 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


Alejandra Alegre


Moebius Syndrome Foundation of Australia
Karin Thompson


Support Group
Liana Ventura, MD

Boneto Reinaldo


Norma Hincape


Danish Moebius Syndrome Organisation
Bo Krogh Nielsen


l’Association Syndrome Moebius France

+(33) 6-64-36-06-45


Moebius Syndrom Deutschland e. V.
49 0 511 98453 55


Support Group
Andreas Kurniawan


Support Group
Hella Edvi


Associazione Italiana Sindrome di Moebius Onlus
Renzo DeGrandi
039 2726229
FAX 039 2724931


Korea Moebius Syndrome Support Group
Meehyun Jin
Seoul, Korea


Dr. Arianel Amador Lara 

The Netherlands

Peter Mul

President of the Dutch Moebius Foundation

New Zealand

Support Group
Suzanne Woon
Hastings, New Zealand


Moebius Peru
Carlos Sanchez, President
Phone: 984-793143


Philippines Support Group
Wennie O. Estrada

South Africa

Support Group
Kay Von Willingh
27 21 862 6902


Fundacion Sindrome de Moebius de España
Tel: 655 19 02 15


Support Group
Anette Book (president)
and Torbjorn Johansson (treasurer)

United Kingdom