Noah

Noah

“Noah aspires to be successful but, for now, he’s considering himself to be a professional gamer. (After school) of course.”

Chase

Chase

God saw you getting tired, and a cure was not to be. So he wrapped his arms around you, and whispered “come to me”

Shauna

Shauna

“Everyone we meet has something that they are dealing with in this world. Pompe disease is mine and I will make the most of it and hopefully the clinical trial I am on will make it better for those who come after me!”

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.