Patient Advocacy: Why It Matters for the Choroideremia Community
What is patient advocacy and why is it important for the Choroideremia global community?
Come join Eric Hartman, the CRF’s director of advocacy, to discuss his role in advancing our foundation’s mission.
Overall, patient advocacy bridges gaps between patients, healthcare providers, researchers, and policymakers, promoting better outcomes and quality of life for those affected by rare diseases like CHM. Learn how the CRF has joined with other IRD patient foundations and rare disease organizations to become a unified, powerful voice with national and international regulators, research organizations, and specialized professional associations.
Additionally, Eric will discuss the role of advocacy for the CRF in helping advance legislation to expedite regulatory processes for both existing and potential new treatments. Learn how the CRF partners with other Rare and Ultra Rare groups to advance legislation and issues important to the broader rare disease community.
Over the years, the CRF has learned and gained much from working with many of these rare disease advocacy groups. Eric also notes, “The CRF organization has grown to become what many consider the gold standard in rare disease patient advocacy. I am regularly approached by other organizations to understand how we, the CRF, tackle certain problems or issues.” In fact, it is the CRF’s stellar reputation for international advocacy and patient support that has led to the CRF being named one of the few single-IRD foundations admitted as a full member of Retina International. Eric has represented the CRF internationally as a delegate and/or speaker at conferences in nine different countries to date.
Please join us for an informative session that is guaranteed to expand your understanding of advocacy, along with the ever-expanding importance of staying informed about what can feel like an alphabet soup of organizations, including the FDA, NIH, NCATS, ARVO, ISGCT, ISGEDR, NORD, RARxVC, RDCA-DAP…
