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Rare Disease Conference 2024 - Rare Disease Summit
March 18-20, 2025
Pre-Conference Workshops on March 17, 2025Sheraton Philadelphia Downtown | Philadelphia, PA

Ashley Point
President at Koolen-de Vries Syndrome Foundation


Ashley Point grew up in Marietta, Georgia and graduated from the University of Kentucky. Ashley worked in national political fundraising for 10 years before attending medical school at Marshall University, where she met her husband, Dana.  After two years, she left medical school to stay home with their three children-Jackson (born 2012), Davis (2014) and Alex Cate (2017).  Ashley became interested in Koolen-de Vries Syndrome (KdVS) after her son, Davis, was diagnosed with Koolen-de Vries Syndrome at 16 months old.  She serves as President of the KdVS Foundation and the My Kool Brother Foundation. Ashley and her family currently reside in Wilmington, North Carolina.

Agenda Sessions

  • Thinking Outside the Box – Forming Unique Partnerships within Rare Disease


At this event