No issue is too small to bring to the UPA Scientific Advisory Board of expert physicians. Every single day, we are connecting patients with our expert doctors for information on the diagnosis, management, and treatment of the porphyrias. We often connect doctors for a peer-to-peer consult. Getting your questions and issues answered is our #1 priority. Don’t hesitate to reach out for support – it's what we do!

The UPA Scientific Advisory Board is comprised of the foremost experts in the porphyrias and heme biosynthesis in the USA. 

This Board reviews all materials and resources that are offered by the United Porphyria Association.

UPA is the designated patient advocacy group for the Porphyrias Consortium network which includes 6 Porphyria Centers and 8 Porphyria Satellite Centers across the US.

The United Porphyrias Association is excited to participate in this year’s Rare Across America and encourage you to join us!

Rare Disease Legislative Advocates (RDLA) organizes meetings for rare disease advocates with Congress Members and/or their staff with the Member’s in-state, district office. Meetings with Representatives will be in-person and meeting with Senators will be virtual. Advocates have the option of attending an in-person meeting with their Representative and/or virtual meetings with their Senators. You can choose to do both the in-person meeting with their Representative and the virtual meetings with their Senators.

The RDLA team also helps to prepare advocates for their meetings, provides legislative resource materials, and hosts pre-meeting training webinars. No prior advocacy experience is necessary. Don’t miss out! Registration closes July 8^th.