Rare Disease Day
Cavernoma wears two hats. According to a medical study, asymptomatic cavernoma affects 1 in 600 people. Not a rare condition. But cavernoma is also symptomatic. 1 in 400,000 patients are diagnosed annually. In this case cavernoma is a rare condition. With this in mind, please raise political awareness of cavernoma. Usually, members of the board and/or regional representatives attend their respective parliaments/national assemblies. This year we do not have that opportunity. So PLEASE make your voice heard by downloading this template application, adding your name and sending to your MP.
If ever people have said "Cavernoma? What's that?" here is your chance to enlighten them by bringing it onto the politicians radar. Your letter might just make the difference.