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Advocacy at
the CRF

Advocacy is a vital part of the Choroideremia Research Foundation’s mission to accelerate treatments and improve the lives of those affected by CHM. H. Eric Hartman, CRF’s Director of Advocacy, represents the CHM community at major rare disease and vision research events around the world—including international scientific conferences, patient advocacy summits, and policy meetings in Washington, D.C. Through these efforts, CRF ensures that the voices of people living with choroideremia are heard wherever important decisions about research, regulation, and access to care are made.

CRF collaborates closely with rare disease organizations, regulatory agencies, and research networks to advance priorities such as expanded access to genetic testing, improved clinical trial pathways, support for family caregivers, and policies that encourage rare disease drug development. By participating in initiatives that aggregate and analyze patient data, CRF helps shape the research environment needed to develop effective treatments.

These advocacy efforts extend globally, strengthening connections with CHM patients, researchers, and partner organizations across Europe, North and South America, and Asia. Through collaboration, education, and representation, CRF continues to advance awareness of choroideremia while helping build the scientific and policy foundation necessary to move promising research forward.

How You Can Make a Difference

Advocacy works best when the CHM community speaks with one voice—and that includes you. Members and supporters can make a real impact by sharing their experiences with elected officials, joining virtual advocacy events, or helping raise awareness about CHM in their communities.

Whether it’s sending a letter to your representative, participating in Rare Disease Week activities, or promoting policies that support patients and families, every action amplifies our mission. CRF provides resources, talking points, and guidance to make it easy to get involved—because together, we can ensure the needs of the CHM community are heard loud and clear. For more information on how you can get involved, contact us at info@curechm.org.

H. Eric Hartman posing in front of Capitol Hill in Washington, D.C., during Rare Disease Week 2026.

H. Eric Hartman posing in front of Capitol Hill in Washington, D.C., during Rare Disease Week 2026.

Kristin Schneider Smedley poses in front of a standing informational display featuring a photo of H. Eric Hartman, CRF Director of Advocacy, from RareDiseases.org. The sign notes that the National Organization for Rare Disorders (NORD) website had more than 12 million visitors in 2018 from over 190 countries.

Kristin Schneider Smedley poses in front of a standing informational display featuring a photo of H. Eric Hartman, CRF Director of Advocacy, from RareDiseases.org. The sign notes that the National Organization for Rare Disorders (NORD) website had more than 12 million visitors in 2018 from over 190 countries.

Large group of rare disease advocates in front of Capitol Hill in Washington, D.C., during Rare Disease Week 2025.

Large group of rare disease advocates in front of Capitol Hill in Washington, D.C., during Rare Disease Week 2025.

H. Eric Hartman, Director of Advocacy at the CRF, poses with an acquaintance at the 2023 ISGEDR Meeting: Innovation in Genetic Ophthalmology & Retinoblastoma in São Paulo, Brazil.

H. Eric Hartman, Director of Advocacy at the CRF, poses with an acquaintance at the 2023 ISGEDR Meeting: Innovation in Genetic Ophthalmology & Retinoblastoma in São Paulo, Brazil.

H. Eric Hartman, Director of Advocacy at the Choroideremia Research Foundation, poses with two acquaintances at the XII Congresso Nacional da Sociedade Brasileira de Oftalmologia.

H. Eric Hartman, Director of Advocacy at the Choroideremia Research Foundation, poses with two acquaintances at the XII Congresso Nacional da Sociedade Brasileira de Oftalmologia.

H. Eric Hartman, Director of Advocacy at the Choroideremia Research Foundation, poses in front of the building hosting the XII Congresso Nacional da Sociedade Brasileira de Oftalmologia in Brazil.

H. Eric Hartman, Director of Advocacy at the Choroideremia Research Foundation, poses in front of the building hosting the XII Congresso Nacional da Sociedade Brasileira de Oftalmologia in Brazil.

Kristin Schneider Smedley, H. Eric Hartman, and an acquaintance pose together at the World Orphan Drug Congress USA 2019.

Kristin Schneider Smedley, H. Eric Hartman, and an acquaintance pose together at the World Orphan Drug Congress USA 2019.

Large group of rare disease advocates, including H. Eric Hartman, CRF Director of Advocacy, during 2026 Rare Disease Week on Capitol Hill in Washington, D.C..

Large group of rare disease advocates, including H. Eric Hartman, CRF Director of Advocacy, during 2026 Rare Disease Week on Capitol Hill in Washington, D.C..

H. Eric Hartman, Kristin Schneider Smedley, and Beth Foss pose together at a rare disease advocacy event.

H. Eric Hartman, Kristin Schneider Smedley, and Beth Foss pose together at a rare disease advocacy event.

Group of five rare disease advocates gathered on Capitol Hill during Rare Disease Day.

Group of five rare disease advocates gathered on Capitol Hill during Rare Disease Day.