On May 4-7, Hope in Focus Marketing and Community Engagement Manager, Eve Orcutt, participated in the Professional Patient Advocates in Life Sciences (PPALS) program at the Sanford Research Center, earning her Patient Advocacy Certificate Training (PACT).
The Sanford Research Center hosts the largest registry in the U.S. for patients with rare diseases, primarily children. Work done at Sanford Research led to the first-ever clinical trial using gene therapies for one of these diseases. PPALS provides an environment where conversations and collaborations with industry and other patient advocacy organizations can happen naturally. The training provides opportunities for connected conversations in a small-group setting.
This is Eve’s second year, joining the intermediate course in the Patient Advocacy Organization (PAO) group. “I am excited to be involved again with PPALS and meeting other people who help push for treatments, engage in advocacy, and provide resources for our community,” Eve said. “I’ve learned more about the industry and gained a comprehensive understanding of our space, while building connections within the rare disease community to bring new information, ideas, and opportunities back to Hope in Focus.”
One session that stood out to Eve was “Fundraising and Beyond” led by Terri L. Klein, CEO and President of the MPS Society. Klein discussed the MPS Society’s work and explained how various fundraising and community engagement strategies can effectively support and grow patient advocacy organizations. The session also gave PAO participants the opportunity to strategize together and discuss ways to better connect with and support their communities.
Experiences like PPALS continue to help Hope in Focus expand its connections, strengthen advocacy efforts, and bring valuable resources to the rare disease community.
