Pompe Day is wrapping up soon for another year. It’s important to point out that for Pompe families, Pompe Day is 365 days long.
We still live in a world where there are over 300 million people living with over 6,000 rare diseases. That’s enough to populate the 3rd largest country in the world. We have the tools to diagnose them quicker, but we aren’t doing it.
This year, for International Pompe Day, we’re launching Portraits of Pompe, an ongoing curation of stories and photos from Pompe patients and families.
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”.
Leading up to International Pompe Day, CAP did a #DYK awareness campaign on Twitter.
Complex and infinitely challenging, finding diagnoses for rare diseases takes real heroes that lead the charge in this battle.
Flash was designed with the help of 7 year old Noah, who lives with Pompe disease. Noah is a courageous young boy that was diagnosed with Pompe disease when he was 2, in 2011. In Noah’s case, this means he has an enlarged heart.
Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008. Since then it has spread with events all around the world that reach hundreds of thousands of people. Rare Disease Day always takes place on the last day of February.
New Jersey has designated Feb 28 to be Pompe Disease Awareness Day, to increase public awareness of Pompe Disease.