Foundation’s Executive Director Represents the APBD Community at NORD’s 2025 Breakthrough Summit 

Oct. 24, 2025

Over 900 rare disease advocates, clinicians, researchers, industry partners, and other leaders gathered earlier this month in Washington, DC for the National Organization for Rare Disease’s (NORD) 2025 Breakthrough Summit.

From left to right: Rare advocates Donna Appell (HPS Network), Karen Bly (NOAH), Ashley Appell (HPS Network), Natacha Pires (APBDRF), and Julie Raskin (CHI)
Photo Credit: Julie Raskin


Natacha Pires, MS, MBBS, our Foundation's Executive Director, who attended the event shared, “This year’s Summit served as an encouraging reminder of the power of finding patients and families, the importance of collaboration in advancing research, and the value of getting the next generation of advocates involved early.” 

The APBD Research Foundation is proud to partner with NORD in our commitment to the GSD IV and broader rare community.

 
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