Every year at the end of September we’ll be coming
together as a community to spread the word, unite as an
international rare community and Move for Myhre.

Myhre syndrome is an extremely rare genetic disorder,
that affects many of the body systems.
Currently there is no cure.

So can you make a move for us? Organise a walk or run,
pick your tunes for a dance-a-thon or grab
that whisk and bake up a storm.

Every penny raised goes towards funding research
so we can get answers and stop Myhre in its tracks.