We hope you can join us on Friday, June 10th from 10am to 3:15pm ET for this exciting initiative by the HPS Network to share patient and caregiver perspectives with the FDA on the unmet needs of those living with HPS.  Register now for updates on this event: link to register

Come back here to watch live on June 10th!

Submit Your Comments Early

Submit a comment below on the topics we will be discussing in advance of 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?

FAQ

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What is an Externally Led PFDD Meeting?

It is a day devoted entirely to listening to and learning from patients and caregivers of people living with HPS. Many of the attendees listening will be medical product reviewers working for the FDA who want to have a better understanding of HPS to help them make the best decisions when evaluating future treatments. These reviewers have a great responsibility to weigh the benefits of a treatment vs the risks side effects might pose to patients. For example, would an improved sunscreen that did away with sunburns entirely be worth the risk of developing skin cancer down the road? Some would view current treatments as good enough and others would think it is worth the risk. Likewise, how much does vision, bleeding, bowel, or lung disease impact your daily life? These are the voices WE will be presenting: the voices of those with HPS and their families. This meeting will be open to the public, with speakers and attendees attending virtually. It is vitally important to have as many individuals with HPS and family caregivers as possible attend this meeting. On the day of the meeting, there will be the opportunity to participate in live polling and either call in or write in to join the discussion. The all-day meeting will then be summarized into a “Voice of the Patient” report that will be publicly available. Details on how to attend this virtual meeting will be posted as soon as available.

How do I participate in an Externally Led PFDD Meeting?

This meeting will be open to the public, with speakers and attendees attending virtually. It is vitally important to have as many individuals with HPS and family caregivers as possible attend this meeting. On the day of the meeting, there will be the opportunity to participate in live polling and either call in or write in to join the discussion. The all-day meeting will then be summarized into a “Voice of the Patient” report that will be publicly available. Prior to the meeting, you can submit your comments early.

What was discussed at the April 6th Informational Meeting?

On April 6th we took time from our HPS Awareness Day celebration to learn more about the EL-PFDD process.  Here is the recording of that event if you missed it:  ZOOM recording

Thank you to our Sponsors!

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