August 2026 Porphyria eNews

NewseNews
Written By United Porphyrias

In this issue:

  • Porphyria Palooza! Book now!

  • Upcoming Events: AHP Liver Health and Mental Health webinars.

  • New Resources: CEP Voice of Patient Report, webinar recordings.

  • EPP & XLP Treatment Updates: Dersimelagon ownership change and new bitopertin expanded access sites.

  • Participate in Research: EPP/XLP survey opportunity.

  • UPA and Partner Updates: UPA welcomes new board member, Junior Ambassadors and more!

  • Connect UP with Your Community: Find the group(s) for you!

  • Porphyria Voices: A story of love, strength and hope.

  • Our Stories: Meet Bennet and Milton.

Read August eNews

Past Issues

 
Porphyria Spotlight
August 2026 Porphyria eNews
August 2026 Porphyria eNews

Your August porphyria UPdates are here! Featuring new webinars, research opportunities and patients stories!

Read more →
July 2026 Porphyria eNews
July 2026 Porphyria eNews

Your July porphyria UPdates are here! Featuring new resources, events, patients voices and more!

Read more →
June 2026 Porphyria eNews
June 2026 Porphyria eNews

Your June porphyria UPdates are here! Featuring new learning opportunities for patients and health care providers, partner updates and lots of opportunities to connect!

Read more →
May 2026 Porphyria eNews
May 2026 Porphyria eNews

Your May porphyria UPdates are here! Featuring new AHP treatment guidelines, research opportunities, upcoming events and more.

Read more →

More past issues of UPA’s eNews here.

United Porphyrias
Next

Bitopertin Expanded Access Program