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GETTING INVOLVED IN RARE ADVOCACY

Each year the FDA holds Rare Disease Day. In addition, the Every Life Foundation holds Rare Disease Week. They also house the RDLA – Rare Disease Legislative Advocates that hold regular webinars and Congressional Caucuses (see https://everylifefoundation.org/rare-advocates).

Families of children with rare disorders will feel more empowered and hopeful if they find out as much about their child’s condition as possible. Support groups and parent matching will help them learn what to expect, and choices they have.•

RARE DISEASE WEEK

RARE OPPORTUNITIES: Each year, the Every Life Foundation holds Rare Disease Week and house the RDLA that hold webinars and Congressional Caucuses.

ABOUT THE AUTHOR:

Lauren Agoratus, M.A. is the NJ Coordinator for Family Voices, NJ Regional Coordinator for the Family-to-Family Health Information Center, and Product Development Coordinator for RAISE (Resources for Advocacy, Independence, Self-Determination, and Employment). She also serves as NJ representative for the Caregiver Community Action Network as a volunteer. Nationally, Lauren has served on the Center for Dignity in Healthcare for People with Disabilities transplant committee (antidiscrimination), Center for Health Care Strategies Medicaid Workgroup on Family Engagement, Family Advisor for Children & Youth with Special Health Care Needs National Research Network, National Quality Forum-Pediatric Measures Steering Committee, and Population Health for Children with Medical Complexity Project-UCLA. She has written blogs and articles nationally, including publications in 2 academic journals (pubmed.ncbi.nlm.nih.gov/?term=agoratus+l). Lauren was named a Hero Advocate by Exceptional Parent Magazine (epmagazine.com Archives June 2022).