Genetic ALS & FTD Presentation to the FDA

Genetic ALS & FTD: End the Legacy

In Jan 2023  the genetic als & FTD community will be presenting to the FDA in a private listening session. We will present it again Jan 19th

<p>The Genetic ALS &amp; FTD community organized as Genetic ALS &amp; FTD: End the Legacy will be presenting to the FDA in a private patient listening session focused on the plight of the Pre-Diagnosis  community. We know many are interested in what will be presented so we are offering this public online presentation. Speakers include those impacted by C9orf72 , GRN, Sod1, and Tardpb. We will share an overview of the situation today, analogous situations elsewhere in medicine, and results of our survey on desire for presymptomatic treatment. Further 7 speakers will share short presentations on their and their family’s experiences. Anyone working in ALS or FTD is welcome to hear these stories and we are proud to present them . We will have a time for Q&amp;A at the end. Thank you for your interest! </p><p>P﻿lease only choose one , the google meet registration or the livestream sign up. Only those in the Google Meeting will be able to participate in the Q&amp;A, but we encourage any correspondence afterwards as well . This will be a link so no need to put more then 1 attendee if you are sharing a link. Thank you so much !</p>

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Genetic ALS & FTD Presentation to the FDA

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Genetic ALS & FTD Presentation to the FDA

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