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Have our Say in Policy that Impacts Us

Our community needs to make sure policy issues that impact us are advanced forward. 

Input on 2025 ADRD Summit Priorities

The National Institutes of Health requested input from stakeholders for an upcoming 2025 Summit on Alzheimer's Disease-Related Dementia (in plain speak, dementias that are not Alzheimer's ), which includes FTD. Our short response covers a few key themes for our community: greater coordination with ALS, protection of research participants from harm, protection of communities research is focused on from harm, and the need, above all, for biological markers for disease prevention. 

Response to the Proposed Revision to the UK Code on Genetic Testing and Insurance

We submitted a response and have adapted it into the open letter below. 

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