ACF Module Demo Page

This page contains all the ACF Modules so you can see them used, in action.

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External Link

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Internal Link

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BetterLife FSHD

Prenez le contrôle de votre parcours avec la FSHD et aidez à développer des traitements potentiels plus rapidement.

Rejoignez BetterLife aujourd'hui

Plaidoyer et collecte de fonds

Permettre le changement grâce à la recherche, au soutien et à la défense acharnée des familles de la FSHD.

Patient Resources

Providing patients with knowledge, support, community, and tools for their unique journey.

Recherche et essais cliniques

Faire progresser l'espoir grâce à une recherche révolutionnaire sur la FSHD et à des essais cliniques innovants dans le monde entier.

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Join a Community

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Antennes locales

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Communautés en ligne

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Chapitre sur l'apparition précoce de la FSHD

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S'impliquer

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Façons de donner

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Bénévole

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Collecte de fonds

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This is a Multiple Image Gallery

Use this for Media Libary

Second one

Notre mission

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Notre impact

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Our Third One

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How We Work

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This is a Video Gallery

Guerrilla Ghost "Keep Your Distance" (live-stream)

Guerrilla Ghost "Wesley Snipes in New Jack City" - Live from X-Ray Arcade - 3/7/2021

Local/Live with Guerrilla Ghost from The Ring

Guerrilla Ghost - "Whatever, I Don’t (Health) Care"

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Managing FSD

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The FSHD Society’s vital work in supporting FSHD patients, families, researchers, and advocates is made possible through the generous contributions of corporate partners who are also dedicated to our mission.

If you would like to learn more about partnering with us, please contact us.

Diagnostic

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Tests génétiques

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Université FSHD

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Glossaire de termes scientifiques

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FSHD à début précoce

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Symptômes

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Bibliothèque des patients

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Événements à venir

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 […]

juin 15, 2024 8:00 am - juin 16, 2024 5:00 pm

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.

2024 Idaho Talent Fest

8:30PM ET | 7:30PM CT | 6:30PM MT | 5:30PM PT Saturday, April 13, 2024, 6:30pm MT at the Boise State University Special Events Center Raise money to fund research […]

2024 International Walk & Roll to Cure FSHD

2024 International Walk & Roll to Cure FSHD Register to “walk or roll” today! Invite your family, friends, club members, neighbors, co-workers, classmates or congregation to join you. Everyone who […]

septembre 21, 2024
All Day

2025 Falmouth Road Race

Sunday, August 18, 2024 2025 Falmouth Road Race The 2025 ASICS Falmouth Road Race promises to be an exciting event celebrating 53 years of running the iconic course along the […]

août 17, 2025
All Day

2025 FSHD Connect-Europe

FSHD Europe will organize, in collaboration with the FSHD Society, the first FSHD Connect Europe meeting on June 13th – June 15th, 2025, in Amsterdam, The Netherlands. This is a […]

juin 13, 2025
All Day

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 […]

juin 12, 2025
All Day

Voir tous les événements

We’re Here to Help

BetterLife  FSHD

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Current Trials & Studies

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FSHD Genetic Testing

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True Cost of  FSHD Study

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Vous avez une question, mais vous ne savez pas à qui la poser ?

Ask the FSHD Navigators and get connected with a real person. We are here to journey alongside you and give you the resources you need to live your best life with FSHD!

Envoyez-nous un courriel à l'adresse suivante Navigator@FSHDsociety.org, appeler (781) 301-6060ou poser une question.

Connecteur de soins FSHD

We want to help you connect with providers and resources who are informed about and experienced with FSHD.

Find Resources

Plaidoyer et collecte de fonds

Permettre le changement grâce à la recherche, au soutien et à la défense acharnée des familles de la FSHD.

Patient Resources

Providing patients with knowledge, support, community, and tools for their unique journey.

Recherche et essais cliniques

Faire progresser l'espoir grâce à une recherche révolutionnaire sur la FSHD et à des essais cliniques innovants dans le monde entier.

Nouvelles et événements de la FSHD

The FSHD Society, SOLVE FSHD, and the FSHD CTRN Announce Launch of Industry Collaborative to Improve FSHD Clinical Trials

Publié le avril 8th, 20264/8/26

The FSHD Industry Collaborative is a first-of-its-kind, multi-stakeholder initiative designed to improve how FSHD clinical trials are designed, executed, and evaluated RANDOLPH, Mass. and VANCOUVER, BC, April 8, 2026 /PRNewswire/ […]

Classé sous : Nouvelles de la société FSHD

Tags : Recherche clinique, essais cliniques

Nouvelles de la société FSHD

Connecter notre communauté grâce aux dernières informations sur la FSHD, la recherche, les nouveaux acteurs et les avancées.

Obtenir des nouvelles

Recherche sur la FSHD

Accélérer les découvertes scientifiques et les avancées cliniques afin de mettre au point des traitements et une cure pour la FSHD.

Découvrir la recherche

Evénements

Rejoignez-nous pour des événements engageants qui favorisent la communauté, sensibilisent et soutiennent les familles et les initiatives de la FSHD.

Trouver des événements

Toutes les nouvelles

Latest Updates & News

The FSHD Society, SOLVE FSHD, and the FSHD CTRN Announce Launch of Industry Collaborative to Improve FSHD Clinical Trials

Publié le avril 8th, 20264/8/26

Classé sous : Nouvelles de la société FSHD

Tags : Recherche clinique, essais cliniques

The All-Canada Chapters National Meeting – February 5th, 2026

Publié le mars 31st, 20263/31/26

by Karen Camarta, Alberta Chapter Director The Canadian FSHD Community gathered on February 5th for the second Canada-Wide Chapter meeting, co-hosted by our Alberta and Quebec Chapters. The incredible turnout […]

Classé sous : Vivre avec la FSHD

Sarepta’s letter to the FSHD community

Publié le mars 25th, 20263/25/26

On March 25, 2026, Sarepta shared the following letter to the FSHD Community: Dear Members of the FSHD Community, We are reaching out today for the first time to briefly […]

Classé sous : Général

How do hormones impact muscle function in FSHD?

Publié le mars 23rd, 20263/23/26

By Dr. Lucienne Ronco This is a question we often hear from FSHD patients. Human hormones, like estrogen, impact muscle health in general, not just in disease. In healthy muscle, […]

Classé sous : Recherche sur la FSHD, Santé et médecine, Vivre avec la FSHD

Mirecule Expands Strategic FSHD Collaboration with Sanofi

Publié le mars 21st, 20263/21/26

Originally posted to Business Wire on March 18, 2026 GAITHERSBURG, Md.–(BUSINESS WIRE)–Mirecule, Inc., a leader in Antibody RNA Conjugate (ARC) therapeutics targeting rare neuromuscular diseases, today announced an expansion of […]

Classé sous : Recherche sur la FSHD

Roche stops development of Emugrobart

Publié le mars 19th, 20263/19/26

Dr. Lucienne Ronco, Chief Science Officer of the FSHD Society Originally published on March 19, 2026 Edited for clarity as of March 20, 2026 Today we received news that Roche […]

Classé sous : Recherche sur la FSHD, Nouvelles de la société FSHD

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Qui sommes-nous ?

The FSHD Society is the world’s largest research-focused patient organization for facioscapulohumeral muscular dystrophy (FSHD), one of the most prevalent forms of muscular dystrophy.