What We Do

The Moebius Research Trust was set up in September 2006 by two sets of parents with children who have the condition. They recognised that as the condition was so rare there would be no Government funding into this condition. So they set about doing something themselves…


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.

When my son was diagnosed with this condition it felt like we were truly alone. The Moebius Research Trust helped us by putting us in touch with other families with the condition. It helped enormously. — Ceridwen Hughes


  • We have a database of over 120 people with the condition in the UK.
  • We have built connections with a wide range of medical professionals.
  • We produce regular articles on Moebius Syndrome in the press and online.
  • We provide a signposting service to those with the condition.
  • We have raised over £110,000 to date with the help of our supporters.
  • We will be hosting regular mini conferences in the UK.
  • We have built strong links with Overseas organisations who support those with Moebius Syndrome.

If you have any questions about Moebius Syndrome or would like further information about Moebius Syndrome Research Trust, please contact us.

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