Our Voice of the Patient Forum on April 21st is our community’s platform to testify to the FDA on the impact of FSHD. When the FDA considers whether to approve a new drug, it needs to know whether the drug works better than treatments that patients are using now. Help us prepare for our meeting by taking our survey about any treatments you are currently using to address your FSHD-related health issues.
The deadline to register to attend the Voice of the Patient Forum in person is fast approaching. If you wish to attend, please sign up now.
Our Voice of the Patient Report will be submitted to the FDA for inclusion in the framework used to evaluate future FSHD therapies. Everyone—patients and family members, at every stage of disease progression—should be involved. This ensures that the report accurately reflects the experiences and needs of the entire community.
We are grateful for your responses to our most recent survey, in which you shared your biggest concerns for the future. Many of you expressed great anxiety over how the condition will progress, stemming from not being able to predict when and how one’s muscles will weaken. Other top concerns were loss of mobility and loss independence, which include fears about a declining quality of life, needing a caregiver, becoming a burden to family members, and being unable to care for yourself and your family through daily activities and financially. Your responses drove home just how urgently we must push for treatments that can slow, and hopefully stop, the progression of FSHD.
Visit our event page for the Voice of the Patient Forum where you can:
- Register for the live webcast on April 21
- Register to attend the meeting on April 21 in Hyattsville, Maryland (space is limited).
- Listen to our webinar and Q&A about the meeting.