caryl harris
Contact Caryl​

Caryl Harris co-founded Avery's Hope in 2017 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 and find it challenging to cover all of the costs of medical tests, medication, and out of pocket expenses.

Before patient advocacy became a passion, Caryl worked as an educator, a Bicycle Specialist and also a Sustainable Transportation Advocate. In 2017 she was asked to participate in a Storytelling Workshop with Illumina, Inc. and has since become a Patient Ambassador for Illumina, Inc.

As the Founder & Executive Director of Avery’s Hope, Caryl established the HOPE Fund for Families for the Department of Gastroenterology, Hepatology & Nutrition at Children’s Hospital of Philadelphia and created relationships with both Children’s Hospital of Pittsburgh and St. Jude Children’s Research Hospital Patient Assistance Programs. Caryl and her board members have participated in many of the Rare Disease conferences around the United States.

Caryl’s first article, written for The Mighty, was published in February 2019.

Caryl is an avid cyclist, an artist, a wife, a mom to three amazing young men, and "Ya Ya" to an amazing little man battling Microvillus Inclusion Disease.

Areas of Advocacy Expertise:

  • Nonprofit Organization

  • Fundraising

  • Social Media & Marketing

  • Story Telling

  • Advocacy Partnerships outside of disease-specific community

  • Public Speaking

  • Legislation/Lobbying on Capitol Hill

  • LinkedIn - White Circle

The Rare Advocacy Movement (RAM) is a rare disease community-based advocacy initiative focused on addressing the issues that affect the real world people of the rare disease community.  RAM serves as a community-based Center of Insight and Collaboration for rare disease focused stakeholders seeking authentic collaborations and comprehensive community insights. Each current RAM member has made a public vow to always act in the best interests of the rare disease community through the adopted Code of Conduct for Membership or risk being removed from the RAM membership and network.