Submit a comment up to 30 days after the meeting
The comments collected may be used in the final Voice of the Patient report (with identifying information removed).
- What symptoms do you or your loved one find most bothersome?
- Has your day-to-day life changed as a result of your sarcoidosis?
- Are there specific activities that are important to you that you are no longer able to do?
- What do you fear most about sarcoidosis and its impact on your life?
- What does a good day look like? What does a bad day look like?
- How have your symptoms and condition changed over time?
- Would you consider your condition well-managed?
- What are you currently doing to manage your or your loved one’s sarcoidosis?
- Do you have any therapies that have worked for you? What did you like about them (including non-drug therapies)?
- Has your treatment regimen changed? And why?
- What symptoms (if any) are the treatments addressing well?
- What are the biggest challenges with current therapies?
- What side effects do you wish you didn’t have to deal with?
- What concerns do you have about clinical trials? What would make you more likely to participate in a trial?
- What would you consider a meaningful improvement of therapy?
- When changing medicines, do you have fear of flare or other concerns?
- Short of a cure, what do you hope an ideal treatment would address?
*Please Note*
During the EL-PFDD you will hear stories from other patients and caregivers. You may find some of these stories triggering or emotional. For those of you who are newly diagnosed, please note that the stories you hear may not be representative of your experience as sarcoidosis is very different individual to individual. We want to encourage you to step away and take care of yourself as needed throughout the recording.
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