The Rare Sibling Experience

March 25, 2021

Rare disease impacts extend beyond the patient themselves and can have a profound effect on families. Siblings of rare patients are placed in an unusual position replete with its own challenges. This program will investigate the role of rare siblings with input from multiple experts on the subject including:

• Eden Van Alstine, MS, CCLS, Child Life Specialist, Children’s Hospital of Philadelphia
• Kate McGowen, MEd, CCLS II, Child Life Specialist, Children’s Hospital of Philadelphia
• Dr. David Rintell, Ed.D, Psychologist, VP and Head of Patient Advocacy, BridgeBio
• Hannah Raskin-Gross, Rare Sibling Advocate, Congenital Hyperinsulinism

Click here to sign up.