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Policy and Advocacy Efforts

ETL advocates for policies that support people and families affected by genetic ALS and FTD, strengthen research, and protect individuals from genetic discrimination. Explore examples of our policy work below.

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Legislative status, funding priorities, and legal protections can change. Each item reflects the circumstances and ETL’s position at the time it was published.

Educating on Genetic Protections 

In 2020, Florida enacted legislation addressing insurers’ use of genetic information. ETL supports efforts to strengthen protections against genetic discrimination and has developed educational material about this issue.

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Insurance and privacy laws differ by jurisdiction and may change. This information is educational and should not be interpreted as legal or insurance advice.

2025 Advocacy for Federal ALS Research Funding

ALS ORG LETTER TO CONGRESS GRAPHIC MARCH 14 2025.png

In 2025, ETL joined a coalition of ALS organizations calling for sustained federal investment in ALS research and related programs. The coalition’s specific requests reflected the FY2026 budget proces

Input on 2025 ADRD Summit Priorities

Ahead of the 2025 NIH Alzheimer’s Disease-Related Dementias Summit, ETL submitted comments concerning coordination between ALS and FTD research, protection of research participants and communities, and the development of biomarkers relevant to prevention research.

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

ETL submitted a response to the proposed revisions and adapted its comments into the open letter below.

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