Community Resource Hub

A trusted, global hub for patients, caregivers, medical professionals, and advocacy organizations — with education, clinical trial tools, and treatment readiness resources.

Find the resources you need, wherever you are in your journey.

This hub is designed to meet you where you are. Whether you were just diagnosed last week or have been living with FSHD for years, the steps below will help you find the resources that matter most to you — quickly and without needing to know where to look.

How to Use the Hub

Where are you right now?

The first thing you’ll see on the toolkit page are three options describing your stage with FSHD. Choose the one that feels closest to your situation right now — there are no wrong answers, and you can change it at any time. We’ll surface the most relevant resources for you.

  • Beginner, Newly Diagnosed: You’ve recently received an FSHD diagnosis, or you’re just starting to learn about the condition. This level is your starting point.

  • Intermediate, Building Knowledge: You’ve been living with FSHD for some time and are ready to go deeper. Whether you’re expanding your understanding of the condition or just beginning to explore research and clinical trials, this level meets you where you are. 

  • Advanced, Experienced & Research-Ready: You’ve built a strong foundation of FSHD knowledge, have been living with a diagnosis for five or more years, or are ready to actively engage in research and clinical trials. 

How are you connected to the FSHD Community?

Under the audience filter, select the role that best defines who you are. This will help tailor resources that best fit your needs.

  • Patient – Resources focused on your personal health journey and how to access clinical trials, self-advocacy, and day-to-day life with FSHD.
  • Caregiver – Guidance on supporting a loved one with FSHD, navigating the care system, and avoiding caregiver burnout.
  • Medical professional – Clinical references, diagnostic tools, and information on FSHD-specific care pathways and emerging treatments.
  • Patient advocacy org – Tools to support your community, contribute resources to the global library, and connect with the WFA network.

Once you’ve set your stage and role, the resource library updates to show the most relevant materials. You can also:

  • Search by keyword — type any topic, condition, or phrase (e.g. “genetic testing,” “fatigue,” “clinical trial phases”) into the search bar to find specific resources.
  • Filter by category — use the category chips to narrow resources by type. Each category is color-coded so you can spot them at a glance:

    • Research: Stay informed and get involved. Explore the global FSHD research landscape, learn how clinical trials work, and find opportunities to participate in studies that are shaping the future of care. 

    • Living with FSHD: Practical support for everyday life. From managing symptoms and finding specialists to connecting with community — resources to help you and your loved ones navigate life with FSHD. 

    • Therapies: Know your options. Learn about therapeutic approaches under investigation, from gene therapy to DUX4 silencing, and access tools to help you prepare for emerging treatment decisions.

  • Each resource displays a level tag — Beginner through Advanced — so you always know if a resource is right for your level of familiarity.

You don’t have to navigate this alone. The toolkit connects you to patient advocacy organizations (PAOs) worldwide — local groups that offer peer support, local resources, and community connections in your language and region.

Find Your Closest Organization

If you’re a PAO or organization with resources to contribute, visit the Submit a resource link to add materials to the global library and help others in the FSHD community.

Community Resource Hub

Frequently Asked Questions

What if I don't know which stage applies to me?

Choose whichever feels closest. If you’re unsure, “Just getting started” is a great place to begin — it shows foundational resources that are useful at any stage. You can always switch to a different stage to explore more advanced content.

Many resources in the library are available in multiple languages. Where a translation exists, it is noted in the resource title. The WFA is actively working with member organizations to expand multilingual coverage. If you need a resource in a specific language, contact your regional PAO through the Connect section.

All resources in this toolkit are curated and reviewed by the World FSHD Alliance and its member organizations. Only materials from verified patient advocacy organizations, clinical institutions, and peer-reviewed sources are included. Resources are reviewed regularly for accuracy and currency.

Yes. Patient advocacy organizations and clinical groups are encouraged to submit resources for consideration. Use the “Submit a resource” link in the toolkit, or contact the WFA directly. All submissions go through a review process before being published.