Rare Disease Report

Lisa Schill

Lisa Schill is a parent advocate, dedicated to improving the lives of those living with rare diseases. Ms. Schill specializes in connecting caregivers, researchers, support organizations and families to help support patients in the pursuit of advancing treatment options and patient outcomes. She currently serves as Vice President of the RASopathies Network, a non-profit dedicated to advancing research of the RASopathies by bringing together families, clinicians and scientists. She is currently working as a Meetup Advocacy Ambassador for Global Genes facilitating rare disease meet ups for the aHUS (Atypical Hemolytic-Uremic Syndrome) population. She is a co-investigator for the 2015 International Meeting on the Genetic Syndromes on the RAS/MAPk Pathway to be held in Seattle, WA with the co-chairs, Drs. David Stevenson and Brigitte Widemann.
November 14, 2016
We have the opportunity to work together for the common good to help save precious lives by passing 21st Century Cures.
February 10, 2015
When my son was first diagnosed with a RASopathy, I was so excited to finally have a diagnosis. That was quickly replaced by despair.
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