Welcome to Moebius Research Trust!
The Moebius Research Trust was set up in September 2006 by two sets of parents with children who have the condition.
Their aim is to raise the £250,000 required to fund research into Moebius Syndrome.
They believe that within three years of starting the testing, an answer is achievable allowing the Trust to publish the results worldwide.
This Charity Trust has been set up for two main reasons:
- To raise £250,000 allowing ground breaking research into the cause of Moebius Syndrome
- To find 100 people with Moebius Syndrome who will assist us with the DNA testing
How can you help?
If you, or someone you know have been diagnosed with this condition, please contact us.
We are attempting to create a data base of subjects which may be asked to help with the UK scientific research into the cause of moebius through the diagnosis of Micro Deletion Testing. This research is taking place at The Western General Hospital in Edinburgh and they are currently working with Dr Wayne Lam who is applying to the Ethics Committee for Approval. This will then allow them to begin collecting blood samples and start the data gathering process.
In order to find the cause and move ahead, we really do need your help
The Moebius Research Trust
“Doctors Didn’t Know What Was Wrong With My Baby”
Read Sara and Mark’s story as they struggled to have their beautiful daughter properly diagnosed. Baby Isabella was born with Moebius Syndrome but as the condition is so rare it took months for doctors to recognise it. They are now helping to raise money to increase awareness so no other families have to go through what they did. Get the full story here.