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 group of patient advocacy professionals dedicated to the overall advancement of the rare disease patient advocacy professional ecosystem and landscape. Membership and participation in RAM is subject to the observance of the established Code of Conduct for Membership ("Code of Conduct") and the acceptance of the established and adopted RAM Process Document. All members and affiliates of RAM vow to abide by the established Code of Conduct. Any RAM member or affiliate who may violate the Code of Conduct in parts and/or in its entirety will be subject to immediate removal from the RAM membership and/or affiliation.