Welcome to the International Pompe Association (IPA)
To raise awareness on Pompe Disease and to get attention from politicians and the Minister of Health in Australia, the Australian Pompe Association (APA) organised a social media event. The APA is a small patient organisation having 30 members. Via Thunderclap 179 messages were send to the Minister of Health on April 15, International Pompe Day. Also a number of members of parliament retweeted the tweets the APA had sent to them on International Pompe Day. In total 480 social media mentions of Pompe Disease were registered.
From all over the world people involved in Pompe Disease supported this initiative of the APA and showed that Together We Are Strong!
Raymond Saich, president APA, raising his voice on rare diseases at the Rare Voices Parliamentary BBQ.
Poland and Italy celebrate International Pompe Day
Associazione Italiana Glicogenosi (AIG) has given quite some attention to the first International Pompe Day that will be celebrated on April 15. April 15 has been elected to be the day of celebration by the international Pompe Community to honor Dr. J.C. Pompe. This day was the day of his death in 1945, killed by the Nazi Germans.
AIG created an animated video to promote International Pompe Day. The video tells about the problems of Pompe Disease, but that together we are strong. For more information you can visit the website of AIG, but also the Facebook page that was created for International Pompe Day
The Pompe Association Poland invites you for the celebration of International Pompe Day at April 15. The meeting will take place in the Library and Information Center at the Medical University of Warsaw.
Location: Library and Information Centre at the Medical University of Warsaw.
Time: 14.00 hrs
You can find more information of the event at: http://www.facebook.com/OgrodPompego
For Immediate Release: April 9, 2014
Download Press Release (PDF 271 kB)
The IPA is excited to announce that the international Pompe community has chosen April 15, 2014 as the first annual International Pompe Day. The goal is to foster international awareness of Pompe Disease under the slogan "Together We Are Strong." As a united community of patients, family, friends, physicians, scientists, and industry we have an undeniable strength. It is as a united community (the Pompe Model) that we have made great strides in learning more about Pompe Disease and in working towards treatments and disease management. It is as a united community that we support each other when the daily struggles of living with Pompe become too much. Nothing that has been accomplished would have been possible without everyone working together. Together We Are Strong!
The International Pompe Association (IPA) is organizing a variety of awareness activities including an online Photo Gallery! Many other events are being planned around the world to mobilize the community and increase awareness. For more information please visit the IPA website www.worldpompe.org to see how YOU can participate!