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Everyone diagnosed with FSHD is on a journey. But there is no single patient journey. So, the FSHD Society makes all our resources available to patients and puts patients in control of what to access and when.
Experience working with patients who are living with FSHD has helped us create this action plan. A great way to get started is to look at this checklist and see if you have completed all, or some, or none of the items. This action plan is basically a best practices guide for working toward confronting an FSHD diagnosis and moving toward your best life.
BetterLife FSHD is a comprehensive program designed to help you live your best life with FSHD. Access resources and support for managing symptoms, improving physical and emotional well-being, and connecting with others. Discover personalized strategies to help you thrive on your FSHD journey.
FSHD Navigators are informed, compassionate, and experienced in guiding patients and families through their FSHD journey. They will help make sure you can access relevant resources based on your specific needs and challenges. Just connect and communicate with a navigator for personalized guidance to the information and resources to best support you on your journey.
“My biggest motivator to participate in clinical research is trying to make sure there is a treatment in case my kids end up having FSHD. My second biggest motivator… to get better myself! There are a lot of things I would love to be able to do with my family!
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Finding healthcare professionals with experience and expertise in FSHD can make a significant difference in your journey. The Care Connector is a tool that helps you identify specialists and clinics experienced in managing FSHD. Build your care team with confidence and receive the specialized support you deserve.
Stay informed and inspired with the FSHD Society’s podcasts on FSHD Radio and our YouTube channel. Hear from experts, individuals living with FSHD, and advocates as they share their knowledge, experiences, and tips for living well with FSHD. Make hope and connection part of your journey through these channels.
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