Caryl Harris co-founded Avery's Hope with her husband, Eric. Named for their beautiful, and beautifully rare, grandson. Avery's Hope's mission is to "pay it forward" to other families whose children have rare gastrointestinal diseases. The organization’s mission is to assist rare, ultra-rare, and undiagnosed pediatric GI patient families with out-of-pocket and insurance denied expenses.
Caryl is a founding member of WRAP (Worldwide Rare Advocacy Partnership) collaborating with other rare disease advocates around the world on issues facing the rare disease community.
Caryl is a former member of RAM - Rare Advocacy Movement. RAM is a rare disease community leadership network founded on the premise of developing mutually beneficial collaborations between rare disease community leaders, influencers, experts and other rare disease stakeholders.
Caryl, as well as Avery’s Hope, is a member of the National Organization for Rare Disorders and is a representative for Avery’s Hope with the EveryLife Foundation for Rare Diseases, and Global Gene’s Rare Patient Alliance. She also serves as a Patient Ambassador for Illumina, Inc., a leader in whole genome sequencing technology.
Caryl has not yet retired from her “day job” and is a Bicycle Specialist for goHunterdon - Promoting Sustainable Transportation in Hunterdon County, NJ, Caryl is an avid cyclist, an artist, a wife, a mom to three amazing young men, a grandma, and "Ya Ya"; to an amazing young man living with Microvillus Inclusion Disease.
Publications and Presentations:
What It’s Like to Watch Your Grandchild with a Rare Disease
Avery’s Diagnostic Journey: Two presentation given to Illumina employees, 2020 and 2021
Financial Resources for Rare Pediatric GI Patient Families: A presentation to the GI Social Work Department at Children’s Hospital of Philadelphia 2021
Advocacy Panel at the 2019 Medical Affairs Conference, Philadelphia
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