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.

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.