THE FRENCH MOEBIUS SYNDROME ASSOCIATION
Our thanks to the Many Faces of Moebius Syndrome for passing this along:
"The French Moebius Syndrome Association (Association Syndrome de Moebius France) was created in 1997 and has grown considerably since its initial launch, although it still remains a fairly small body, with around 100 members. We meet once a year at our AGM, organised on a rota basis by a volunteer family. Spread over 4 days, the AGM not only provides our members and other supporters with information as to the latest projects, news and so on, but is also an invaluable way for families to get together, share experiences with one another, and generally have a good time. Various of our members also meet in December in Paris to take part in the annual “Rare Disorders March” through the streets of the capital. Although the weather is not always on our side, this is another great way of meeting up and at the same time of showing our support for the sufferers of other rare diseases.

As well as providing support to our members, the Association is involved in a number of different projects. A few years ago, we helped create a centralised consultation clinic at the Trousseau Hospital in Paris, where families and individuals with Moebius can consult a variety of medical experts. The benefits are two-way, as these consultations also help the medical field to better understand the syndrome itself. Other projects have included a mailshot of our brochure to all paediatricians in France and some other French-speaking countries, with the aim of increasing awareness of the syndrome. Two years ago we created an interactive DVD aimed at students and staff in primary and secondary schools (ages 6 to 15). The DVD provides information on the syndrome via interviews and short documentary sequences, plus some fun quizzes and Q&A sessions for kids to use. We really hope this will be a key to making it easier for kids with Moebius syndrome to be fully integrated in school and at the same time spread awareness of the syndrome across the education system. Over the years, we’ve also been involved in trying to establish a census of people who have Moebius Syndrome in France To date, we’ve identified around 90 people, although no doubt there are more that we don’t yet know about.

We hope that in the future we’ll be able to increase our cooperation with other Moebius Syndrome groups across the globe, and in particular in Europe. We’d like to think that one day some sort of centralised, coordinated research programme could be set up, however the hurdles are considerable and progress is slow. We are delighted to work closely with Eurordis (The European Organisation for Rare Diseases) and to be able to converse with other Moebius organisations, a task made much easier via a translation service provided by Eurordis.

We would like to thank The Many Faces of Moebius Syndrome for inviting us to write this article, which is a great way of telling others a little bit about who we are and what we do. For more information, you can visit our website at: http://www.moebius-france.com/

“Never underestimate the power of dreams and the influence of the human spirit. We are all the same in this notion. The potential for greatness lives within each of us. ”Wilma Rudolph (1940-1994)