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The Rare Advocacy Movement (RAM) is a group of patient advocacy professionals dedicated to the overall advancement of the rare disease patient advocacy professional ecosystem and landscape. Membership and participation in RAM is subject to the observance of the established Code of Conduct for Membership ("Code of Conduct") and the acceptance of the established and adopted RAM Process Document. All members and affiliates of RAM vow to abide by the established Code of Conduct. Any RAM member or affiliate who may violate the Code of Conduct in parts and/or in its entirety will be subject to immediate removal from the RAM membership and/or affiliation.

caryl harris
Contact Caryl

averyshopepa@gmail.com​

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