“Noah aspires to be successful but, for now, he’s considering himself to be a professional gamer. (After school) of course.”
God saw you getting tired, and a cure was not to be. So he wrapped his arms around you, and whispered “come to me”
“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!”
“We want our child to be able to live the life she wants.”
“I want to be an architect”
“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.”
“Hey I’ve fallen and can’t get up. Throw me a pillow and some crumbs…”
April 15 is International Pompe Day. After losing too many patients the past few years, this year I’m filled with more questions than answers.
The IPA believes that raising awareness about Pompe Disease is key, and for this year the theme that has been selected is “Moving On with Pompe”.
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.