You are here: Home / Rare Disease Information / Patient Organizations Database

Search Patient Organizations

Enter organization name or disease name to search for organizations that help people with rare diseases.

0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z

**IMPORTANT**

The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

Moebius Syndrome Association

Address

5011 Hillside Drive
Beamsville
Ontario, L0R 1B7
Canada

Phone

905-563-0938

Fax

--

800 Number

--

TDD

--

Email Address

davebatenburg@sympatico.ca

Website

http://www.www.moebiussyndrome.ca

The Moebius Syndrome Association is an international, non-profit organization in Canada dedicated to providing information, assistance, and support to affected families. Moebius syndrome is an extremely rare developmental disorder characterized by incomplete development of certain nerves arising from the brain (sixth and seventh cranial nerves), resulting in eye muscle and facial paralysis and/or other symptoms and findings. The disorder is thought to be genetic and is apparent at birth (congenital). The Moebius Syndrome Association was established in 1997 and currently consists of approximately 900 affected families worldwide. The association is committed to increasing public and professional awareness of Moebius syndrome, promoting research, engaging in-patient and professional education, and offering networking opportunities to affected families. In addition, the association links individuals and families to support groups throughout the world, engages in lobbying, has a directory, and provides a variety of educational materials including pamphlets, reports, and a regular newsletter and has a web site.

0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z

NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.

 
Copyright ©2014 NORD - National Organization for Rare Disorders, Inc. All rights reserved.
The following trademarks/registered service marks are owned by NORD: NORD, National Organization for Rare Disorders, the NORD logo, RareConnect. .