In this issue:
Upcoming Events: Link UP in-person in Denver, CO.
Treatment Updates: First trial for CEP begins, Disc announces positive phase 3 results and more!
Participate in Research: PULSE longitudinal study, insurance experience and Pathway Clinical Trial.
New Research: CEP symptoms and the impact of quality of life
Porphyria Palooza Highlights
New Resources: What's UP Doc? Live Recording.
UPA in the Community: UPA attends PeDRA.
Advocacy Update: Vote for rare disease.
Connect UP with Your Community: Find the group(s) for you!
Our Stories: Meet Sabaritha and Pierre.
Porphyria Merch: Visit the UPA Store.
Past Issues
Porphyria Spotlight
More past issues of UPA’s eNews here.