December 31, 2025
Grief Happens in Rare Disease: Let’s Talk About it Already
Webinar Details Title: Grief Happens in Rare Disease: Let’s Talk About it Already Date: Thursday, January 15, 2026 Speaker:Lisa Keefauver,
November 28, 2025
Tiffany House and Maryze Schoneveld van der Linde Honored at Sanofi’s Global Rare Impact Awards
At Sanofi’s inaugural Global Rare Impact Awards ceremony held on November 14, 2025, in Vienna, three extraordinary leaders were recognized
October 1, 2025
Check Back Soon for Upcoming Webinars
We don’t have a webinar scheduled at the moment, but more exciting sessions are on the way! Check back soon
September 30, 2025
Overview of Breathing Muscle Weakness in Neuromuscular Disease (NMD)
Webinar Details Title: Overview of Breathing Muscle Weakness in Neuromuscular Disease (NMD) Date: Thursday, September 25, 2025 Speaker:Andrea Klein Webinar
September 28, 2025
Grief and Rare Disease: Recognizing Loss and Building Grief Literacy
This past May, our hearts broke twice. Within just two weeks, the Pompe community said goodbye to two extraordinary advocates: