"UNTIL THE CURE IS FOUND"

 

Lisa YourmanLisa Yourman - Coalition Chair

Lisa Yourman is a mother of two children with cystic fibrosis, and a patient and parent advocate for all people who live with cystic fibrosis. She has served as an expert witness for matters relating to pharmaceutical and healthcare legislation, acting as an advocate to provide a patient's perspective on issues related to healthcare reform and pharmaceutical related issues. She has developed a website to create public awareness for cystic fibrosis and authored a booklet to help newly diagnosed families. Among her extensive activities advocating for people with cystic fibrosis, Lisa has provided written testimony for the Newborn Screening Program just recently enacted in New Jersey, influenced legislative bills related to health insurance and cystic fibrosis legislation, and was appointed in 1995 as a consumer representative by the Governor of NJ and is serving as Vice-Chair on the Board of Trustees of the New Jersey Individual Health Insurance Board which governs all individual health insurance policies in NJ. In 2002, Lisa created a coalition "Action CF" (until the cure is found) which provides advocacy development and education as it relates to access to prescription drugs, a major issue for Cystic Fibrosis patients.

Currently, Ms. Yourman uses the knowledge she has learned over the years to empower parents about their rights under special education law (Section 504 and IDEA) and health insurance.

 

 

 

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