July 2026 Porphyria eNews

NewseNews
Written by United Porphyrias

In this issue:

  • New Resources! Light filters for EPP, WhatsApp Community, AHP handout, webinar recording.

  • Upcoming Events: New EPP/XLP investigational treatment study and Porphyria Palooza!

  • Bitopertin Expanded Access: Sites now open!

  • Porphyria Voices: Living with Chronic Illness.

  • Participate in Research: Thank you to participants.

  • UPA and Partner Updates: Fox 5 Interview, attending Gordon Conference, UPA Latin America.

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

  • Our Stories: Meet Molly and Gillian.

Read July eNews

Past Issues

 
Porphyria Spotlight
October 2026 Porphyria eNews
October 2026 Porphyria eNews

Your October porphyria UPdates are here! Featuring treatment updates, new research opportunities and Palooza highlights!

Read more →
September 2026 Porphyria eNews
September 2026 Porphyria eNews

Your September porphyria UPdates are here! Featuring new merch, events research opportunities and patients stories!

Read more →
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
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August 2026 Porphyria eNews

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New Handout! Guidance for Genetic Carriers of AIP, VP or HCP