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  1. Events
  2. FSHD Society

FSHD Society

(781) 301-6060
fshdmeetings@fshdsociety.org
http://www.FSHDSociety.org
Today

February 2023

Tue 14
Featured Featured Feb 14 @ 9:00 am - 10:00 am

FSHD Radio: Community Profiles

Facebook and YouTube

Tuesday, February 14th On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. This month’s guest is Paul Ronson of Suffolk, England, a radio... Read More »

Tue 14
Featured Featured Feb 14 @ 1:00 pm - 2:00 pm

FSHD University: FORTITUDE A Phase 1/2 Clinical Trial of AOC 1020 in Adults with FSHD

Zoom Web Conference

Learn about the FDA's recent fast track designation for Avidity's FSHD therapeutic here. 1:00 pm ET | noon CT | 11:00 am MT | 10:00 am PT | 18:00 GMT | 19:00 CET Avidity Biosciences has announced its plans to launch FORTITUDE, a Phase 1 / 2 clinical trial in FSHD of the novel compound... Read More »

Tue 21
Featured Featured Feb 21 @ 7:00 pm - 8:00 pm Recurring Event Early-Onset Parent Roundtable

Early-Onset Parent Roundtable

Zoom Virtual Meeting

Tuesday, January 17th 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... Read More »

March 2023

Tue 14
Featured Featured Mar 14 @ 9:00 am - 10:00 am

FSHD Radio: Community Profiles

Facebook and YouTube

Tuesday, March 14th On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. More details on this episode's guest and topic to come.... Read More »

Tue 21
Featured Featured Mar 21 @ 7:00 pm - 8:00 pm Recurring Event Early-Onset Parent Roundtable

Early-Onset Parent Roundtable

Zoom Virtual Meeting

Tuesday, January 17th 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... Read More »

April 2023

Tue 11
Featured Featured Apr 11 @ 9:00 am - 10:00 am

FSHD Radio: Community Profiles

Facebook and YouTube

Tuesday, April 11th On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. More details on this episode's guest and topic to come.... Read More »

Tue 18
Featured Featured Apr 18 @ 7:00 pm - 8:00 pm Recurring Event Early-Onset Parent Roundtable

Early-Onset Parent Roundtable

Zoom Virtual Meeting

Tuesday, January 17th 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... Read More »

May 2023

Sat 6
Featured Featured May 6 @ 10:00 am - 3:30 pm

Rochester FSHD 360

University of Rochester Saunders Research Building 265 Crittenden Blvd., Rochester, NY

9:00 a.m. US ET doors open | 10:00-3:30 p.m. US ET conference sessions The FSHD Society, in collaboration with the University of Rochester Medical Center, is hosting this year’s Rochester FSHD 360 conference. The University of Rochester is an epicenter for FSHD research in the U.S. in its role as the data hub for the... Read More »

Tue 9
Featured Featured May 9 @ 9:00 am - 10:00 am

FSHD Radio: Community Profiles

Facebook and YouTube

Tuesday, May 9th On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. More details on this episode's guest and topic to come.... Read More »

Tue 16
Featured Featured May 16 @ 7:00 pm - 8:00 pm Recurring Event Early-Onset Parent Roundtable

Early-Onset Parent Roundtable

Zoom Virtual Meeting

Tuesday, January 17th 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... Read More »

Thu 18
FSHD University Logo
Featured Featured May 18 @ 1:00 pm - 2:00 pm

FSHD University: What every newly diagnosed person should know

Zoom Web Conference

1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Dr. Bakri Elshiekh We want to make sure that newcomers to the FSHD community have an opportunity to learn the basics and have their questions answered by a sympathetic expert. And those who have known of their diagnosis for a while... Read More »

June 2023

Tue 13
Featured Featured Jun 13 @ 9:00 am - 10:00 am

FSHD Radio: Community Profiles

Facebook and YouTube

Tuesday, June 13th On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. More details on this episode's guest and topic to come.... Read More »

Tue 20
Featured Featured Jun 20 @ 7:00 pm - 8:00 pm Recurring Event Early-Onset Parent Roundtable

Early-Onset Parent Roundtable

Zoom Virtual Meeting

Tuesday, January 17th 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... Read More »

July 2023

Tue 11
Featured Featured Jul 11 @ 9:00 am - 10:00 am

FSHD Radio: Community Profiles

Facebook and YouTube

Tuesday, July 11th On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. More details on this episode's guest and topic to come.... Read More »

Tue 18
Featured Featured Jul 18 @ 7:00 pm - 8:00 pm Recurring Event Early-Onset Parent Roundtable

Early-Onset Parent Roundtable

Zoom Virtual Meeting

Tuesday, January 17th 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... Read More »

August 2023

Tue 8
Featured Featured Aug 8 @ 9:00 am - 10:00 am

FSHD Radio: Community Profiles

Facebook and YouTube

Tuesday, August 8th On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. More details on this episode's guest and topic to come.... Read More »

Tue 15
Featured Featured Aug 15 @ 7:00 pm - 8:00 pm Recurring Event Early-Onset Parent Roundtable

Early-Onset Parent Roundtable

Zoom Virtual Meeting

Tuesday, January 17th 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... Read More »

September 2023

Tue 12
Featured Featured Sep 12 @ 9:00 am - 10:00 am

FSHD Radio: Community Profiles

Facebook and YouTube

Tuesday, September 12th On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. More details on this episode's guest and topic to come.... Read More »

Tue 19
Featured Featured Sep 19 @ 7:00 pm - 8:00 pm Recurring Event Early-Onset Parent Roundtable

Early-Onset Parent Roundtable

Zoom Virtual Meeting

Tuesday, January 17th 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... Read More »

October 2023

Tue 10
Featured Featured Oct 10 @ 9:00 am - 10:00 am

FSHD Radio: Community Profiles

Facebook and YouTube

Tuesday, October 10th On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. More details on this episode's guest and topic to come.... Read More »

Tue 17
Featured Featured Oct 17 @ 7:00 pm - 8:00 pm Recurring Event Early-Onset Parent Roundtable

Early-Onset Parent Roundtable

Zoom Virtual Meeting

Tuesday, January 17th 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... Read More »

November 2023

Tue 14
Featured Featured Nov 14 @ 9:00 am - 10:00 am

FSHD Radio: Community Profiles

Facebook and YouTube

Tuesday, November 14th On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. More details on this episode's guest and topic to come.... Read More »

Tue 21
Featured Featured Nov 21 @ 7:00 pm - 8:00 pm Recurring Event Early-Onset Parent Roundtable

Early-Onset Parent Roundtable

Zoom Virtual Meeting

Tuesday, January 17th 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... Read More »

December 2023

Tue 12
Featured Featured Dec 12 @ 9:00 am - 10:00 am

FSHD Radio: Community Profiles

Facebook and YouTube

Tuesday, December 12th On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. More details on this episode's guest and topic to come.... Read More »

Tue 19
Featured Featured Dec 19 @ 7:00 pm - 8:00 pm Recurring Event Early-Onset Parent Roundtable

Early-Onset Parent Roundtable

Zoom Virtual Meeting

Tuesday, January 17th 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... Read More »

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