Making Connections In Person

FIRST held the second of four patient meet-ups planned for 2023.

Over 30 people gathered in Tampa to meet, share skin care tips, learn and gather and give support.  Prior to the meeting, a few attendees had never met another with ichthyosis and the emotions began right away.  Dr. Sharon Albers, from The University of South Florida, presented an overview of ichthyosis and answered so many questions. Conversations then continued over a delicious lunch. After, Jess Raiz, from Timber Pharmaceuticals, explained what to expect when participating in a clinical trial and why it’s so important to do so. Jess also discussed Timber’s current Phase 3 Ascend study for ARCI and XLI.

Many exchanged contact information so that they could continue to support each other moving forward. These meetings are just as important for the FIRST staff as they are for our members.

Participants received FroggToggs and Microdermamitts, in addition to FIRST materials.

FIRST held two additional meet ups during 2023.

FIRST's 2023 One-Day Meetings are Sponsored by Beiersdorf