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Tay-Sachs, Canavan, GM1 and Sandhoff diseases

Advocacy

Information to help advocate for legislation and other related advocacy issues.

Documents

pdf 2021 January NTSAD FDA Late Onset GM2 Patient Listening session Popular

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2021 January NTSAD FDA Late Onset GM2 Patient Listening session.pdf

Members of the Late Onset Tay-Sachs and Sandhoff (LOTSS) community participated in a listening session with the U.S. Food and Drug Administration (FDA), so regulators could better understand the impact of heterogenous disease on the lives of individuals and their families.

pdf US Senate Twitter handles Popular

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US-Senate-Twitter-handles.pdf

pdf Global Genes Toolkit: Bringing Rare Disease to Capitol Hill Popular

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GG-Advocacy-Toolkit-Capitol-Hill.pdf

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