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Early-Onset Parent Roundtable

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Jun 18 @ 9:00 am - 10:00 am

Saturday, June 18 – Special FSHD Connect edition

9:00 AM ET | 8:00 AM CT | 7:00 AM MT | 6:00 AM PT

This month we are meeting live with the Early-Onset Families Unite! breakout session at the FSHD Connect conference in Orlando. Join us via Zoom with us as we discuss strategies for activating families, clinicians, and researchers to make sure kids with early-onset FSHD are included in studies and will have access to therapies that are being developed.

Our monthly Early-Onset Parent Roundtable meets on the 3rd Tuesday of each month, where parents meet to exchange ideas, offer support, and gain insight to keep our children with FSHD as healthy and mobile as possible. 

We will have plenty of time for parents to exchange ideas and ask/answer questions from other parents.

We’d love your thoughts and participation. Please join us and bring your ideas, questions, answers, and tips and tricks.

Once you join the group by submitting your RSVP for a meeting, you will not need to register for each month’s meeting. You will automatically receive monthly reminders and call-in/Zoom information. If you participated in one of our meetings in 2021, you are automatically a part of the group and do not need to register again. You may change your group membership at any time by emailing us at info@fshdsociety.org

Ally Roets & Sam Ray

Early-Onset Chapter Directors

Learn more about the Early-Onset FSHD Chapter: FSHDSociety.org/Early-onset-chapter

Details

Date:
Jun 18
Time:
9:00 am - 10:00 am
Event Categories:
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Venue

Virtual
Denver, United States

Organizer

Early-onset FSHD Chapter
Email:
earlyonsetchapter@fshdsociety.org