28th of February is Rare Disease Day! Today we take the opportunity to join a global community raising awareness of rare diseases. 1:17 people will be affected by a rare disease in their lifetime. View the official Rare Disease Day video:
Rett Syndrome is one of Rare diseases. It affects 1:10,000 females and 1:40,000 males. One of the more common rare diseases causing severe disability.
Rett syndrome is complex and it’s very isolating for families. Seeing your child regress in front of your very eyes is devastating. Post regression, a lifetime of medical complexity follows yet their understanding, their want to communicate and be heard shines through.
We support Rare! We support families affected by Rett syndrome!