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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 throughout the EL-PFDD meeting. Comments should be submitted individually.

Of all the symptoms of Hermansky-Pudlak Syndrome which 1-3 symptoms have the most significant impact on you or your loved one’s life?

How does Hermansky-Pudlak Syndrome affect you or your loved one on best and on worst days? Describe your best days and your worst days.

Are there specific activities that are important that you or your loved one cannot do at all or as fully as you would like because of Hermansky-Pudlak Syndrome?

How has your loved one’s ability to cope with the symptoms changed over time?