Patient Journey

Rare Disease Day 2023 was an incredible day to advocate for rare diseases and to create critical awareness. Porphyria was on stage at multiple events as patients worked to “put hope into action” for our community!

Jennifer at National Institutes of Health

Jennifer Beck gave a powerful speech at the NIH's Rare Disease Day event about living with EPP.

Watch her full speech here.

Jennifer appeared on a panel with UPA's own Kristen Wheeden. You can see a recording of the full day including Jennifer and Kristen's panel at the NIH website.