Marfan UK is not so much to inform people medically about Marfans syndrome, but to create a social enviroment for people with marfans syndrome to discuss their problems regarding this …
A great 4 page fact sheet summarising key facts and where to go for help and support.
TfL have recently introduced a badge to help Adults and Children who may have difficulty standing/ waiting on all TfL transport. It is designed to be supportive for hidden disabilities …
A UK wide charity providing advice, information and support to parents of all disabled children.
A great link to a collection of opportunities for supportive holidays, grants and adapted accomodation. This link has a range of different opportunites listed and who is eligable to apply. …
Sensory Overload by ICanTalkNowAutism.
Shows children and teens who have Marfan syndrome. (Photos generously provided by Rick Guidotti/Positive Exposure and Timothy D. Joyce)
Some key facts about Marfan Syndrome.
A woman with Marfan Syndrome who has hypermobile joints.
An article about Lucy Hunter who has Marfan Syndrome and she also has two children who have the same syndrome.