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

Erin Santos-Primis
President at Isabella Santos Foundation
Speaker

Profile

Turning pain into purpose, Erin Santos leads the charge at the Isabella Santos Foundation (ISF) with a mission to redefine pediatric cancer fundraising. In 2007, she was faced with news no parent ever wants to hear: her daughter, Isabella, was diagnosed with Neuroblastoma, a rare form of pediatric cancer with a 40% survival rate and fewer than 700 cases in the United States. That year marked the beginning of her journey to challenge traditional pediatric cancer fundraising methods. While it didn’t save her daughter’s life, she hopes ISF will be a beacon of genuine hope for others.

Agenda Sessions

  • Leveraging the Patient Voice to Advance Collaboration and Partnership

    1:15pm