Advice About Moebius Syndrome

Just been diagnosed with Moebius Syndrome or have a child or relative with the condition?

Once you have received a diagnosis it is important to see specialists. Moebius Syndrome affects people in different ways and as such you may need to see a range of specialists.

Your GP or paediatrician may not know much about the condition and as such you may need to do your own research. Often by speaking to other people with this condition you can find who they recommend. Don’t be afraid to ask the consultant if they have seen other people with Moebius Syndrome and if not whether they can refer you to a colleague with more experience of the condition.

Some consultants you may need to see include:

Plastic or reconstructive surgeon
Maxillofacial surgeon
Neurologist
Neurosurgeon
Eye Surgeon
Ophthalmologist
Orthodontist
Physiotherapist
Psychologist/counsellor
Speech and language therapist
Speech and language therapist – feeding specialist
Hand/feet Plastic Surgeon
Orthopaedic Surgeon

To support those with the condition the Moebius Research Trust are happy to signpost people wherever possible. We can put you in touch with other people in your area or those with similar aspects of the condition. Please contact us if you have any questions.

Additional support

There are many support organisations in the UK and overseas who can provide additional advice or networks. Many also have events to raise awareness or issues around Rare Diseases and/or Genetic Conditions. We have listed a few of these here with links to their sites/pages.

United Kingdom

Facial Palsy UK – has a specific information page about Moebius Syndrome on their website.

Changing Faces – provides a support phone line and online services, promotes respect and guidance for everyone with any visible difference.

Contact – bring families together and help families take action for others. Find out more from their website or sign up to their newsletter.

Genetic Alliance/Rare Disease UK – provide information and organise events for Rare Disease Day.

RARE Revolution Magazine – is a leading, award winning publication elevating the voices of rare disease patients, caregivers, and charities. With a worldwide audience of almost 50 million in 2023 we are doing our part in turning the tide for rare disease.

Rare Disease Collaborative Network – are an important part of the NHS architecture initiated by NHS England and NHS Improvement to improve care and support for patients with rare diseases – there is a centre for Moebius Syndrome.

Social media support groups in the UK

Our charity Facebook Page provides an opportunity for you to communicate with others with the Syndrome and to keep up to date with events and new information.

Moebius Syndrome UK Support Group – support group set up for families with children with Moebius Sydrome.

Organisations & social media support groups – worldwide

Moebius Syndrome Foundation (USA)

National Organisation for Rare Disorders (USA)

Rare Voices (Australia)

Smile Foundation (South Africa)

Association Syndrome Moebius (France)

Children’s Craniofacial Association (USA)

The Home f or the Moebius Community (USA)

Sindrome de Moebius America Latina

Moebius Syndrome Foundation Africa

Moebius Friends Support Network (USA)