Alexandra

Alexandra

“If you look for a silver lining, you’ll find something sweet—for me it was meeting all of the wonderful people I have connected with through the process of navigating life with Pompe.”

Rare Disease Day 2019

Rare Disease Day 2019

February 28, 2019 will be the twelfth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities.

Rare Disease Heroes

Complex and infinitely challenging, finding diagnoses for rare diseases takes real heroes that lead the charge in this battle.

Rare Disease Day 2017 from CAP

Rare Disease Day 2017 from CAP

February 28, 2017 marks the tenth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities based on the theme of research.