Mar 1, 2026 | UPCOMING TWYPP SESSIONS
A Personal Look at the Benefits of Having a Portacath Session Details Title: A Personal Look at the Benefits of Having a Portacath Date: Thursday, March 19, 2026 Time: 1 p.m. CST / 2 p.m. EST Moderator:Lucas Garrett Summary:The concept of IV enzyme replacement...
Feb 24, 2026 | ARCHIVES, NEWS
Honoring Advocacy: Celebrating Tiffany House and the RareVoice Awards This week is Rare Disease Week, with events and activities taking place worldwide to bring awareness to rare diseases and honor the community. One such event is “Rare Disease Week on Capitol...
Feb 5, 2026 | ARCHIVES, NEWS
We are honored to share this moment recognizing Tiffany House as a recipient of the RareVoice Award for State Advocacy. The award is presented by the EveryLife Foundation For Rare Diseases. This award is given to advocates whose voices have helped shape meaningful...
Feb 4, 2026 | ARCHIVES, NEWS
The AMDA is excited to announce that the 15th Annual PCMA’s Pull for Pompe fundraiser will take place on Saturday, May 2, 2026, from 8 a.m. to 2 p.m. CST at the National Shooting Complex in San Antonio, Texas! The Pull for Pompe clay shooting event is designed...
Jan 28, 2026 | PAST TWYPP SESSIONS
Session Details Title: Our Adaptations with Pompe Disease Date: Wednesday, February 11, 2026 Moderator:George Fox Session Summary:Living with Pompe disease often means finding new ways to adapt. In this Talking With Your Pompe Peeps (TWYPP) session, George, a dad of...
