The following information may help to address your question:
We are going to suggest you connect with the following resources and also talk to your doctor or other trusted medical professional (for example a nurse or a speech, occupational or
Nonprofit support and advocacy groups can offer a way to connect to others who may have similar experiences and share similar concerns. In addition, members of the Medical Advisory Boards may be be an excellent resource to answer your questions.
For Moebius syndrome there is a very active support and advocacy group in the United States - but like most foundations for rare conditions, it welcomes international members. It has an active young adult and adult platform. And even has a Young Adult Advisory Board which is presently expanding and accepting applications for new young people to join.
Moebius Syndrome Foundation
PO Box 147
Pilot Grove, MO 65276
The Moebius Syndrome Foundation has information on Employment and Disability Resources.
There is also a group in the United Kingdom. This group appears more focused on driving research to gain a better understanding of the condition and to develop treatments. However, in addition, the group does appear to hold a conference during which people affected by Moebius syndrome in the UK can connect in person with one another.
Moebius Research Trust
49 Inglis Avenue
East Lothian Eh32 0ag
United Kingdom 01875 819822