Countdown to Moebius Syndrome Awareness Day 2019

Moebius Syndrome Foundation

Mission: The Moebius Syndrome Foundation's mission is to provide information and support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions.

Moebius Research Trust

Mission: In order to fund research into Moebius Syndrome the Charity needs to raise £250,000.  The aim is to find the cause of the Syndrome.  We believe that as technological advances have moved on so much in the last few years it is possible to find the cause.  These results would be published Worldwide and could really make a difference to so many people's lives.

In addition to research the Moebius Research Trust provides a signposting service to those with the condition.  This includes providing informative articles and research documents on their Facebook Page, Twitter and this website.  The charity works closely with a wide range of medical experts and aims to raise awareness of this condition within the medical profession and wider community.

Syndrome Moebius France

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.

Italian Moebius Syndrome Association O.N.L.U.S.
About: A non-profit organization founded by parents who have joined in order to combat the Moebius syndrome and also to promote the development and dissemination of scientific research in Italy in the field of diagnosis and treatment of Moebius syndrome and to encourage the improvement of services and 'social-medical assistance for children affected by Moebius Syndrome and their families, resulting in progressive collaboration with associations and institutes operating in Italy and abroad and adaptation of the optimal field.

Spanish Moebius Syndrome Foundation
The Foundation, MOEBIUS syndrome is legally registered on 12 May 1998, thanks to the efforts of some affected and to the lack of information about this syndrome.

Although that date is officially legalized, its gestation occurs a year and a half before following a meeting of concerned which are agreed that it should continue and guidelines which are summarized in the following way:

"Foundation aims to support SOCIAL, educational, informative and MORALE of all affected MOEBIUS syndrome and people related to them"

On the previous idea, and despite the inexperience and short life of the Foundation, are being achieved goals that encourage us to continue in this line of work to achieve the greatest possible degree of knowledge of this picture of symptoms known as Moebius syndrome.

From these pages we want to publicize this strange syndrome as well as the Foundation; Who we are, what the Moebius syndrome, goals, made, ongoing and future projects. We also inform contacts and international projects which we believe fundamental knowledge for more complete of this syndrome. We include graphical information related to it and if necessary we have footage of television programs and meetings of affected all aimed to make him known.

Despite all of the above, we are aware that without the cooperation of all will be difficult to achieve our goals and achieve the goal that we aim to learn about this rare condition called MOEBIUS syndrome.

Cleft Palate Foundation
About: The mission of the Cleft Palate Foundation (CPF) is to serve individuals and families affected by cleft lip/palate and other craniofacial conditions by connecting them to team care, providing education, and offering personal support.  CPF is a 501(c)(3) nonprofit organization founded in 1973 to be the public service arm of the American Cleft Palate-Craniofacial Association.

About: The Cleft Palate Foundation is supported solely through tax-deductible contributions. Your tax deductible gift can help ensure that the valuable services CPF provides to families today will continue to be available in the future.


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