Watch the live event in English or Spanish!

Thank you to our Panelists!

Carmen Camacho

Carmen Camacho

Leslie Rojas

Leslie Rojas

Candice & Crystal Sipe

Candice & Crystal Sipe

Heather Kirkwood

Heather Kirkwood

Caren Shank

Caren Shank

Milagros Santiago

Milagros Santiago

Karen Tillman

Karen Tillman

Patrice Wein

Patrice Wein

Ashley Appell

Ashley Appell

Christina Cislak

Christina Cislak

Thank you to our Discussion Starters!

Nancy Lee

Nancy Lee

Cassandra Mendez

Cassandra Mendez

Gina Danziger

Gina Danziger

Noel Gomez

Noel Gomez

Kristen & Kylee Brantner

Kristen & Kylee Brantner

Yeida Soto

Yeida Soto

Jill Pounders

Jill Pounders

Heather Walton

Heather Walton

Mariel Rancel

Mariel Rancel

Kelly Campbell

Kelly Campbell

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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EveryLife Foundation