Gay Grossman
Gay has been active in the Rare Disease community for over two decades and continues her efforts to build and support patient and family advocacy. She co-founded ADCY5.org, the foundation for ADCY5-related dyskinesia. ADCY5.org supports world-renowned researchers who study the gene and its variant. She continues to build a community of hundreds with this disease, when they started with only 1.

 

She is an advocate of shared data and patients owning their data. Her focus remains to help all Rare Disease patients. 

 

Together with her daughter Lilly, she co-authored a children’s Rare Disease book, We Are All Rare, providing a Rare Disease learning tool for elementary school aged children.

 

Early in her career, Gay’s success at Glaxo Inc., provided her with an introduction to science that she now applies when sharing the burden of disease, to bring awareness through advocacy, and public speaking.

 

Gay successfully advocates in a variety of environments including, but not limited to, educational classrooms, private, state, and federal insurance, as well as collaborating in the Rare Disease space to gain access to clinical trials and medical therapies.

 

She is currently the Director of Patient Engagement at Neurogene Inc. and applies her life learning to help other Rare Disease families.

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The Rare Advocacy Movement (RAM) is a patient advocacy initiative focused on documenting the evolving complex structure and unique dynamics of the rare disease patient advocacy landscape. RAM serves as a Center of Insight (COI) for those interested in participating in collaborative patient advocacy initiatives and working groups within the rare disease industry. The RAM membership is comprised of a network of patient advocacy professionals that have vowed to abide by the established Code of Conduct for Membership.