Live Polling
Respond to polling questions in real time! Go to PollEv.com/FSRPFDD and make your voice count!
Phone-in Live
Want to talk to us live during the discussion sessions? Please call 1-703-844-3231 when prompted.
*Due to time restrictions, we may not be able to get to all phone calls.
Submit a Written Comment
Submit a comment below on the topics we will be discussing in advance of the EL-PFDD meeting. Comments should be submitted individually.
The comments collected may be shared during the Sarcoidosis EL-PFDD and may also 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?