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The GENFI FTD Initiative Logo

The Genetic Frontotemporal Dementia Initiative (GENFI) is an international research collaboration focused on familial frontotemporal dementia (FTD) and related genetic mutations in C9ORF72, GRN, and MAPT. By participating, I join over 1,500 individuals worldwide helping to discover early biomarkers and develop potential treatments for FTD. Coordinated by Professor Jonathan Rohrer at University College London, GENFI unites leading research centres across Europe and Canada.

For me, joining the GENFI study has been transformative. When I initially had to face my own genetic condition, I lacked substantial knowledge about what this meant for me personally. However, through my participation, what was once a frightening unknown has now become an area of empowerment and education. I'm sharing details of the GENFI study to ensure others facing similar circumstances can access the same resources and support.

All you need to know

The information provided on this page reflects my personal experiences and perspectives as a participant. It has been written solely by me and does not represent the views or opinions of GENFI. Aren't I professional including a disclaimer? I've shocked myself.

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