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FSHD University – Project Mercury
Zoom Web Conference , United States1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Josie Godfrey There is great progress toward new medicines for FSHD, but even when a drug... Read More »
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North Carolina Chapter “Third Thursdays”
Zoom Virtual Meeting , United States7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Dear friends, Welcome to the "Third Thursday" meetings of the North Carolina Chapter! Whether or not you've attended our... Read More »
2024 Denver Colfax Marathon
Saturday, May 18, 2024 Join the Denver Colfax Marathon Team for the FSHD Society! The Denver Colfax Marathon is a nationally recognized event featuring unique courses incorporating the iconic landmarks... Read More »
North Carolina Chapter Social Gathering
Floyd & Blackies: 142 8th Avenue, Cramerton, NC 28032 142 8th Avenue, Cramerton, NC, United States5:00pm ET | 4:00pm CT | 3:00pm MT | 2:00pm PT North Carolina Chapter Social Gathering Please join us for a casual dinner on May 18th at 5pm at Floyd... Read More »
May 20: Western PA Virtual Chapter Meeting
Zoom Virtual Meeting , United States7PM ET | 6PM CT | 5PM MT | 4PM PT Western PA Chapter - Virtual Meeting Please join us on Monday, May 20th at 7:00pm ET for our next virtual... Read More »
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Young Professionals
Young Adults – About Kratom
Zoom Virtual Meeting , United States8:00 pm ET | 7:00 pm CT | 6:00 pm MT | 5:00 pm PT This month we'll learn about kratom, a medical herb, from Young Adults group co-moderator Chandler... Read More »
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Early-Onset Parent Roundtable
Early-Onset Parent Roundtable – Heloise Hoffmann
Zoom Virtual Meeting , United States8:00 PM ET | 7:00 PM CT | 6:00 PM MT | 5:00 PM PT CHANGE NOTICE: Instead of recapping Hill Day, we welcome our esteemed guest, Heloise Hoffmann. Heloise... Read More »
New England Chapter Meeting
Zoom Virtual Meeting , United States7PM ET | 6PM CT | 5PM MT | 4PM PT New England Chapter - Virtual Meeting Please join us for our next virtual chapter meeting, taking place on May... Read More »
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Feeling Fit with FSHD
Feeling Fit with FSHD – Nerve pain and mobility, part 2
Zoom Virtual Meeting , United States18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT This is part two of this month's... Read More »
FSHD Radio: Straight Talk with Tim Hollenback
Facebook and YouTubeWhen a busy schedule, family needs, and chronic pain limit your bandwidth, committing to regular exercise and healthy eating can be hard. In this episode of FSHD Straight Talk, host... Read More »
Virginia Chapter, Monthly Virtual Chapter Meeting
Zoom Virtual Meeting , United States6:00pm ET | 5:00pm CT | 4:00pm MT | 3:00pm PT Virginia Chapter Monthly Virtual Meeting (occurs every 4th Tuesday of the month). RSVP via the below button to ensure... Read More »
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CarePartner Hour
CarePartner Hour
Zoom Virtual Meeting , United States8:00 – 9:00 PM ET | 7-8pm CT | 6-7pm MT | 5-6pm PT This monthly meeting is for those of you who are providing care to loved ones with... Read More »
North Texas Virtual Chapter Meeting
Virtual Denver, United States8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting 7:00pm-8:00pm CT Please join us on the last Wednesday of the month for a... Read More »
2024 North Texas Virtual Chapter Meetings
Zoom Virtual Meeting , United States8:00pm ET | 7:00pm CT | 6:00pm MT | 5:00pm PT North Texas Virtual Chapter Meeting, 7:00pm-8:00pm CT Please join us on the first Tuesday of every month for a... Read More »
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Women on Wellness
Women On Wellness – A meaningful life after retirement
Zoom Virtual Meeting , United StatesFirst Wednesday of every month 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month's conversation topic is "How to keep a meaningful... Read More »
Texas Commuity Social Hour
Zoom Virtual Meeting , United States7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Texas Community Social Hour Wednesday, June 5, 2024 Join us for a special Texas Social Hour and come catch-up... Read More »
Michigan Chapter Virtual Meeting
Zoom Virtual Meeting , United States7PM ET | 6PM CT | 5PM MT | 4PM PT Michigan Chapter Virtual Meeting Join us at our next virtual chapter meeting, scheduled for Thursday, June 6th at 7pm... Read More »
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Pacific Northwest Day at the Ball Park!
Cheney Stadium, 2502 S Tyler St, Tacoma, WA 98405 Cheney Stadium 2502 S. Tyler St, Tacoma, WA, United States4:00-7:00pm ET | 3:00-6:00pm CT | 2:00-5:00pm MT | 1:00-4:00pm PT Pacific Northwest Day at the Ball Park Sunday, June 9, 2024, 1:00 pm - 4:00 pm PT WHERE: Cheney... Read More »
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Wellness Hour (Virtual Meeting)
Wellness Hour – Adaptive cooking
Zoom Virtual Meeting , United States5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Our guest this month is Diane Corrinne Buck, Gourmet Food Store Owner & Cooking enthusiast.... Read More »
Featured
31st Annual International Research Congress on FSHD
Virtual registration open until June 9th The FSHD Society’s annual FSHD International Research Congress is the premier global conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research. World renowned clinicians,... Read More »
Bay Area Chapter Meeting
Bay Area Chapter Meeting: Connect Watch Party Join the Bay Area Chapter for a special summer chapter meeting this year in Hollister, CA. Our Bay Area Chapter Directors, Kent and... Read More »
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2024 FSHD Connect Conference
CONNECT 2024 will be hosted on June 15-16 in Denver, Colorado. CONNECT brings together world leaders in FSHD research, patient care, advocacy, education, and support. Held every two years, FSHD... Read More »
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FSHD University – FORTITUDE Trial interim results
Zoom Web Conference , United States1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT This World FSHD Day join the Avidity Biosciences team as they share an update on the... Read More »
Alberta Chapter – World FSHD Day Celebration
Wild Rose Brewery - 4580 Quesnay Wood Dr. SW, Calgary, AB 4580 Quesnay Wood Dr. SW, Calgary, AB, Canada5:30pm MT (4:30pm PT | 7:30pm ET | 6:30pm CT) Alberta Chapter - World FSHD Day Celebration Hello Alberta Chapter Friends!! WHAT: On World FSHD Day, June 20, we are... Read More »
BC Chapter World FSHD Day Celebration Event
Rogue Kitchen and Wetbar Gastown 601 West Cordova Street, Vancouver, British Columbia, Canada8:30pm ET | 7:30pm CT | 6:30pm MT | 5:30pm PT BC Chapter - World FSHD Day Celebration Event Thursday, June 20th from 5:30-8:00pm at Rogue Kitchen & Wetbar Gastown,... Read More »
Summer Park Party – Michigan Chapter
Tunnel Park 66 Lakeshore Ave, Holland, MI 49424 - North Picnic Pavilion Lakeshore Avenue, Holland, MI, United States11AM - 3PM ET Summer Park Party - Michigan Chapter Please join us for an in-person social gathering on June 23rd. We are planning a summer park party from 11am... Read More »
Sacramento Chapter Meeting
Zoom Virtual Meeting , United States9:00-10:00pm ET | 8:00-9:00pm CT | 7:00-8:00pm MT | 6:00-7:00pm PT Sacramento Virtual Chapter Meeting Wednesday, July 10, 2024 6:00-7:00pm PT on Zoom Join the Sacramento Chapter for our upcoming... Read More »
Chicago Chapter Virtual Meeting
Zoom Virtual Meeting , United States7:00-8:00pm ET | 6:00-7:00pm CT | 5:00-6:00pm MT | 4:00-5:00pm PT Chicago Chapter Virtual Meeting Thursday, July 11, 2024 via Zoom Join us for our upcoming virtual Chicago Chapter Meeting... Read More »
2024 Triple Bypass Race
Saturday, July 13, 2024 The Triple Bypass The Triple Bypass stretches 118 miles, with 10,800 feet of elevation gain over 3 mountain passes: Juniper, Loveland, and Vail. George is the... Read More »
Western PA Virtual Chapter Meeting
Zoom Virtual Meeting , United States7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Western PA Virtual Chapter Meeting Wednesday, July 17th, 7:00pm ET We will gather for conversation and to provide each... Read More »
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FSHD University – Better Nutrition for FSHD
19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT rpt The foods you eat impact your disease and... Read More »
New England Chapter In-Person Social Gathering
On the Border Mexican Grill & Cantina 1519 Silas Deane Highway, Rocky Hill, CT, United States12-2pm ET | 11a-1pm CT | 10a-12pm MT | 9-11am PT New England Chapter In-Person Social Gathering Friday, July 19, 2024 from 12:00-2:00pm ET at On the Border (Rocky Hill)... Read More »
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2024 W&R
Team Captain Rally & Social Hour
Zoom Virtual Meeting , United States7:00pm ET | 6:00pm CT | 5:00pm MT | 4:00pm PT Team Captain Rally & Social Hour Wednesday, July 31st Join us for our annual Team Captain Rally where we... Read More »
Western PA Chapter 3rd Annual Family Picnic
Adams Township Community Park, 698 Valencia Rd., Mars, PA 16046 Valencia Road, Mars, PA, United StatesWestern PA Chapter 3rd Annual Family Picnic Saturday, August 3rd, 12:00pm ET Location: Adams Township Community Park, 698 Valencia Rd., Mars, PA 16046 Please join us for this fun, in-person... Read More »
Los Angeles Virtual Chapter Meeting
Zoom Virtual Meeting , United StatesLos Angeles Virtual Chapter Meeting Wednesday, August 7th | 6:00 - 7:00 pm PT Join us on Wednesday, August 7th from 6:00 pm - 7:00 pm for our upcoming virtual... Read More »
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Good Bad Things Theatrical Premiere
Theaters Near YouGood Bad Things Theatrical Premiere For nearly a year, we’ve been following the journey of "Good Bad Things," and now, the award-winning film starring Danny Kurtzman, who lives with FSHD,... Read More »
2024 Falmouth Road Race
Sunday, August 18, 2024 2024 Falmouth Road Race The 2024 ASICS Falmouth Road Race promises to be an exciting event celebrating 52 years of running the iconic course along the... Read More »
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The Muscle to Keep Life Moving
The Cape Club of Sharon 25 Tiot Street Sharon, MA 02067 Tiot Street, Sharon, MA, United StatesThe Muscle to Keep Life Moving™ Monday, August 19, 2024 9:00am-6:00pm ET The Cape Club of Sharon: 25 Tiot St, Sharon MA 02067 The FSHD Society is pleased to partner... Read More »
Atlanta Chapter Virtual Meeting: Walk & Roll Prep
Zoom Virtual Meeting , United StatesAtlanta Chapter Virtual Meeting: Walk & Roll Prep Monday, August 19th, 5:30-6:30pm ET Join our virtual meeting for a group brainstorm and discussion on how we can make the 2024... Read More »
St. Louis Chapter In-Person Support Meeting
Webster Groves Public Library - 301 E Lockwood Ave, Webster Groves, MO 63119 East Lockwood Avenue, St. Louis, MO, United StatesSt. Louis Chapter In-Person Support Meeting Tuesday, August 20th, 2024, 7:00-8:00pm CT Webster Groves Public Library - 301 E Lockwood Ave, Webster Groves, MO 63119 We invite all of our... Read More »
Dakotas Chapter Meeting
12:00-2:00pm ET | 11:00am-1:00pm CT | 10:00am-12:00pm MT | 9:00am-11:00am PT Dakotas Chapter Meeting Saturday, August 24, 2024 Location: TBD Restaurant Join the Dakotas Chapter for a special community lunch... Read More »
Virginia Chapter Social Event: Norfolk Tides vs. Worcester Red Sox
Harbor Park Stadium, 150 Park Ave, Norfolk, VA 23510 Park Avenue, Norfolk, VA, United StatesVirginia Chapter Social Event: Norfolk Tides vs. Worcester Red Sox Saturday, August 24, 2024 at 6:00pm Harbor Park Stadium, 150 Park Ave, Norfolk, VA 23510 Please join us on August... Read More »
San Diego Chapter Ice Cream Social
Hilltop Community Park, 9711 Oviedo Way, San Diego, CA 92129 Oviedo Way, San Diego, CA, United States6:30pm ET | 5:30pm CT | 4:30pm MT | 3:30pm PT San Diego Chapter Ice Cream Social Sponsored by Kate Therapeutics Sunday, August 25, 2024 from 3:30 - 5:30pm PT... Read More »
Southeast Multi-Chapter Virtual Meeting
Southeast Multi-Chapter Virtual Meeting Tuesday, August 27, 2024 at 6:00pm ET Amy Halseth and Erika Escartin from Avidity Biosciences will give a short presentation on the recent data from FORTITUDE,... Read More »
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FSHD University: BetterLife FSHD with Amanda Hill
Zoom Web Conference , United States19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT BetterLife FSHD We are thrilled to announce the premiere... Read More »
Western PA Chapter Drum & Roll Prep Virtual Meeting
Zoom Virtual Meeting , United StatesWestern PA Chapter Drum & Roll Prep Virtual Meeting Thursday, August 29, 2024 7:00-8:30pm ET RSVP here: go.fshdsociety.org/l/701273/2023-05-09/439tq1 Join our virtual meeting for a discussion on how we can make... Read More »
New England Virtual Chapter Meeting
New England Virtual Chapter Meeting Thursday, September 12, 2024 at 7:00 PM Meeting Agenda: Walk Leader, Lexi Pappas, will briefly talk about the Walk & Roll taking place on 9/22... Read More »
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FSHD University: Insurance Coverage for Costly Rare-Disease Treatments
Zoom Web Conference , United States19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Insurance Coverage for Costly Rare-Disease Treatments As FSHD is... Read More »
Virtual Screening: Good Bad Things
Virtual TX, United StatesVirtual Screening: Good Bad Things Missed seeing Good Bad Things in theaters? Get your tickets for a virtual screening this weekend. The film will be available from 6:00pm PST on... Read More »
Virginia Chapter Monthly Virtual Meeting
Zoom Virtual Meeting , United StatesVirginia Chapter Monthly Virtual Meeting Tuesday, September 24th, 6:00pm ET Please join us for this casual, conversational monthly meeting. We look forward to catching up with everyone, sharing our updates... Read More »
Alberta Chapter Virtual Meeting
Zoom Virtual Meeting , United StatesAlberta Chapter Virtual Meeting All Canadian FSHD Community Members Welcome Wednesday, October 2, 2024 7:00pm - 8:00pm MT RSVP: https://go.fshdsociety.org/l/701273/2023-01-17/42q91r Following the disappointing news from Fulcrum, Neil Camarta will be... Read More »
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Everything Early Onset
Everything Early Onset – Life Hacks
First Friday of every month 8:00 p.m. ET | 7:00 p.m. CT | 6:00 p.m. MT | 5:00 p.m. PT Do you have any unique strategies to cope with the... Read More »
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Kansas City FSHD 360
Merriam Community Center 6040 Slater St, Merriam, KS, United States9:00 CT doors open. Conference 10:00 a.m. to 4:30 p.m. CT Lunch will be provided Our 2024 FSHD 360 in the Kansas City area is hosted by Dr. Jeffrey Statland... Read More »
Greater Philadelphia Chapter Meeting
Bryn Mawr Rehabilitation Hospital - 414 Paoli Pike, Malvern PA 19355 Paoli Pike, Malvern, PA, United StatesGreater Philadelphia Chapter Meeting Saturday, October 5, 2024, 10:00am-1:00pm ET Location: Bryn Mawr Rehabilitation Hospital - 414 Paoli Pike, Malvern PA 19355 RSVP here: https://go.fshdsociety.org/l/701273/2023-02-14/42vknk Please join us for this... Read More »
Western PA Chapter Virtual Meeting
Zoom Virtual Meeting , United StatesWestern PA Chapter Virtual Meeting Tuesday, October 8, 2024 | 7:00-8:00pm ET RSVP: https://go.fshdsociety.org/l/701273/2023-05-09/439tq1 Join our virtual meeting to talk about the disappointing news that Fulcrum has halted development of... Read More »
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FSHD University: Good Bad Things
Zoom Web Conference , United States19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Good Bad Things Actor and screenwriter Danny Kurtzman and... Read More »
10/23 Chicago Chapter Virtual Meeting
Zoom Virtual Meeting , United StatesChicago Chapter Virtual Meeting Wednesday, October 23, 2024 | 4:00-5:00pm CT Join us to discuss chapter updates and start thinking about activities for next year. We will also have the... Read More »
10/23 New England Virtual Chapter Meeting
Zoom Virtual Meeting , United StatesNew England Chapter Virtual Meeting Wednesday, October 23, 2024 - 7:00pm ET Please join us for our next virtual chapter meeting! We will cover: A recap of our recent Walk... Read More »
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New England FSHD 360
University of Massachusetts Medical Center Plantation Street, Worcester, Massachusetts, United StatesCo-hosted by the UMass Wellstone Center for FSHD and the FSHD Society FSHD research and drug development is in a new era. Do you know what’s happening and how this... Read More »
Pacific Northwest Chapter Winter Education Meeting
Zoom Virtual Meeting , United StatesPacific Northwest Chapter Winter Education Meeting November 2, 2024, Noon to 2pm Topic: Strength Training for Rehabilitation and Maintenance in FSHD. Our guest speaker will be Alex Walker of Walker... Read More »
Colorado Chapter Meeting (In-Person)
Landsdowne Arms Restaurant Dorchester Street, Highlands Ranch, CO, United StatesColorado Chapter Meeting (In-Person) Sunday, November 17, 2024 | 12:00-2:00pm MT, followed by the Broncos game Landsdowne Arms Restaurant 9352 Dorchester St, Highlands Ranch, CO 80129 RSVP: https://go.fshdsociety.org/l/701273/2023-03-30/4327q4 Join the... Read More »
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FSHD University: ReSolve – What We Have Learned
Zoom Web Conference , United States19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT ReSolve – What We Have Learned Presented by Kate... Read More »
Ontario Chapter Brunch Meeting
Milestones Richmond Hill 30 High Tech Rd, Richmond Hill, ON, CanadaOntario Chapter Brunch Meeting Sunday November 24th, 2024: 11:00am - 1:00pm ET Milestones Richmond Hill (30 High Tech Rd. Richmond Hill ON L4B 4L9) Join our Ontario FSHD friends for... Read More »
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2024 FSHD Straight Talk Thanksgiving Special
It's our annual Thanksgiving Special and this year we're featuring musicians living with FSHD. Tune in for interviews, instrumentals, and more.
St. Louis Chapter Holiday Gathering
4Hands Brewery 17081 N Outer 40 Rd, Chesterfield, United StatesSt. Louis Chapter Holiday Gathering Saturday, December 7th, 2:00-4:00pm CT 4Hands Brewery, 17081 N Outer 40 Rd, Chesterfield, MO 63005 RSVP: https://go.fshdsociety.org/l/701273/2023-06-22/43jsb5 Join us for a special holiday gathering to... Read More »
12/11/24 NYC/NJ-Area Virtual Chapter Meeting
Zoom Virtual Meeting , United StatesGreater NYC/NJ-area Chapter Virtual Meeting - Wednesday December 11th, 6pm ET Dear NYC & NJ area FSHD Friends, Please join our local FSHD Community for a virtual meeting by zoom... Read More »
New England Chapter Virtual Meeting
Zoom Virtual Meeting , United StatesNew England Chapter Virtual Meeting Wednesday, December 11, 2024 | 7:00-8:00pm ET RSVP: https://go.fshdsociety.org/l/701273/2023-03-03/42xr1c Join us for chapter and FSHD Society updates, a debrief and takeaways from the November 2nd... Read More »
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FSHD University: Annual Drug Development Update
Zoom Web Conference , United States19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Annual Drug Development Update Presented by Nicholas Johnson, MD,... Read More »
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FSHD University
FSHD University: Mindfulness for Reducing Stress with Ginny Wholley
Zoom Web Conference , United States19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT Mindfulness for Reducing Stress, with Ginny Wholley. Chronic stress... Read More »
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FSHD University – The Burden of FSHD
Zoom Web Conference , United States19:00 CET | 18:00 GMT | 1:00 p.m. ET | 12:00 p.m. CT | 11:00 a.m. MT | 10:00 a.m. PT The Burden of FSHD Despite the significant disease burden,... Read More »
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2025 International Research Congress on FSHD
Save the date! The FSHD Society’s annual FSHD International Research Congress is the premier global conference exclusively focused on facioscapulohumeral muscular dystrophy (FSHD) research. With the recent advances in FSHD... Read More »