Submit a Video Testimonial
Thank you for considering sharing your story with us. Your unique journey with Dermatomyositis holds immense value, making you the true expert in your experiences.
In a brief video (5 minutes or less), kindly share the type of Dermatomyositis you have, the challenges you face daily, and the inner strength that propels you forward. Help us understand what the FDA needs to learn from your perspective. Your voice has the power to instigate significant change in many lives.
Submit Your Written Testimonial
We invite you to submit your thoughts in advance of the EL-PFDD meeting. Please comment individually on any topics we’ll be discussing. These comments might be shared during the Adult Dermatomyositis EL-PFDD and could be included in the final Voice of the Patient report (all identifying information will be removed).
The comments collected may be shared during the Adult Dermatomyositis EL-PFDD and may also be used in the final Voice of the Patient report (with identifying information removed).
Topics to Consider
- Which adult Dermatomyositis symptoms have the most significant impact on your life?
- How does Dermatomyositis affect you on best and worst days? Describe your best and worst days.
- What specific activities, that are important to you, that you cannot do at all or as fully as you would like because of Dermatomyositis?
- How have your symptoms changed over time? How has your ability to cope with the symptoms changed over time?
- What worries and frustrates you most about your condition?
- What are you currently doing to manage your Dermatomyositis?
- How well do these treatments address the most significant symptoms of your Dermatomyositis?
- What are the most significant downsides to your current treatments and how do they affect your daily life?
- Would you participate in a clinical trial to alleviate your symptoms, if so what factors would affect your participation?
- If you have already participated in a clinical trial for Dermatomyositis, how would you describe your experience?
- Short of a complete cure, what specific things would you look for in an ideal treatment for Dermatomyositis?
Together, we stand stronger.