Global Genes RARE Advocacy Summit 2023: Fostering Community and Support in Rare Disease

From September 19-21, 2023, the Global Genes RARE Advocacy Summit was held in San Diego, CA. This event is a yearly convergence for rare disease stakeholders with a special emphasis on advocacy. The summit is an opportunity for making connections, learning the latest in rare disease breakthroughs, and learning about the most effective rare advocacy strategies. Patient Worthy had the privilege to attend this year’s event in support of the rare disease community.

We provided live social media coverage of the event on our Instagram and X profiles. Check out our Instagram profile highlight titled ‘GlobalGenes 23” for some of our coverage of the event. We believe that providing coverage of community events like the Advocacy Summit is a central part of our mission to help amplify the perspectives of people living with a rare disease.

The sessions were divided into four different tracks that included:

  • Track 1: Empowering the Rare Individual
    • This track was primarily focused on patients, and included subjects such as living without a diagnosis, how to communicate with physicians and other healthcare professionals, and transitioning from pediatric to adult care.
  • Track 2: Community and Capacity Building
    • This track prioritized rare patient organizational concerns, such as fundraising, capacity building, community engagement, and nonprofit strategy.
  • Track 3: Becoming a Research Ready Organization
    • A track dedicated to connecting patient groups into the research ecosystem, such as prepping for clinical trials, data collection and sharing, and developing partnerships with prominent scientists and research organizations.
  • Track 4: Rare Disease Master Class: Science and Tech Innovation
    • This track was focused on the latest rare disease scientific advancements, such as gene editing and RNA therapies, the basics of disease biology, case studies, and ‘expert office hours,’ in which caregivers and families could reserve one-on-one time with scientists to help answer their most pressing questions.

To learn more about the Global Genes RARE Advocacy Summit 2023, click here

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