Lighting the Way to a Cure

Loading Events

Early-Onset Parent Roundtable

  • This event has passed.

Jan 18 @ 7:00 pm - 8:00 pm

Tuesday, January 18th

8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT

Join us for our monthly Early-Onset Parent Roundtable 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 are excited to welcome Dr. Ray Huml as our guest this month. Raymond A. Huml, MS, DVM, RAC is Vice President of Medical & Scientific Strategy and Head of Syneos Health’s Rare Disease Consortium. Ray is also the parent to two children with FSHD. Ray published his latest reference book, “Rare Disease Drug Development: Clinical Scientific, Patient, and Caregiver Perspectives” on Nov. 9. He wrote or co-wrote three of its 25 chapters, and the rest were drafted by members of other patient communities. His daughter co-wrote the chapter on FSHD.

Rare Disease Drug Development | SpringerLink

Dr. Huml will speak with us about the drug development process and our role in the process. He will be available to answer questions and exchange ideas.

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

 

Register Button

Details

Date:
Jan 18
Time:
7:00 pm - 8:00 pm
Event Categories:
, , , ,

Venue

Virtual
TX United States

Organizer

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