UPdates

 

 

UPA RECEIVES PRESTIGIOUS CHAN ZUCKERBURG INITIATIVE GRANT

The United Porphyrias Association (UPA) is honored to announce its selection as a recipient of the Chan Zuckerberg Initiative’s (CZI) Rare As One grant. This five-year grant will significantly enhance UPA’s ability to build a comprehensive research network and strengthen collaboration between patients, researchers, and clinicians to accelerate progress in the diagnosis and treatment of porphyria.

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PHASE 3 INSPIRE STUDY FOR MT-7117 NOW RECRUITING PARTICIPANTS
Eligible participants must have EPP or XLP diagnosis, have not previously received MT-7117, be age 12+ and meet additional eligibility requirements. Please complete an INTEREST FORM. Your response is completely confidential, only for designating your interest in further information. Contact UPA at 800-868-1292 or email us at info@porphyria.org with any questions.
 

MT-7117 PHASE 3 TRIAL CONTINUES ACCESS TO DERSIMELAGON AT 200MG DOSE

 

Patients who completed the Phase 3 clinical trial and are currently participating in the Open Label Extension (OLE) will now have continued access to dersimelagon.

  • Who is eligible? Patients who completed the Phase 3 clinical trial
  • Extension time period: Participants will have access to up to an additional 36 weeks
  • Action: Contact your Study Site to transition to this dose at your next regular study visit.

 

UP and Coming

REPRODUCTIVE HEALTH WEBINAR

Join Dr. Rebecca Karp Leaf, a leading porphyria specialist at the Porphyria Center at Massachusetts General Hospital (MGH), for an informative webinar on Saturday, January 11 at 1:00 PM ET. Topics covered include: 

  • Family planning for individuals with porphyria
  • Pregnancy care and important precautions
  • Safety of fertility treatments
  • Birth control options tailored for porphyria patients
  • Hormone replacement therapies

REGISTER FOR LINK

 

APPLY NOW FOR SUN ESCAPE 2025

Shadow Jumpers and the United Porphyria Association have teamed up (again!) for SUN ESCAPE WEEKEND 2025 happening at Victory Junction in North Carolina May 1st to May 4th.

We are looking for 32 photosensitive families from across North America (and 40 volunteers) to join us in celebrating all things Fun and all things No Sun.

SUN ESCAPE is open to kids from North America ages 6-17 with a photosensitive condition and their families. The weekend is completely free to participating families, including travel costs.

LEARN MORE AND APPLY

 

 

TALK TO SOMEONE WHO UNDERSTANDS

Connect by phone or video call to receive support, guidance and build meaningful connections with a fellow porphyria patient or caregiver. Available in English and Spanish.

REQUEST A CALL

 

YOU ARE NOT ALONE!Connecting with others who understand what you're going through is a great way to build a support system and community. Join a Connect Up group to connect and socialize with others in a safe and inclusive environment (via Zoom). We have groups for AIP, HCP, VP, EPP, XLP, HCP and CEP. New groups are formed based on interests and experiences.

SIGN UP TO JOIN.

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Types of Porphyria

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Acute Intermittent Porphyria (AIP)

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Hereditary Coproporphyria (HCP)

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Variegate Porphyria (VP)

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ALAD-Deficiency Porphyria (ADP)

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Porphyria Cutanea Tarda (PCT)

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Erythropoietic Protoporphyria (EPP) and X-Linked Porphyria (XLP)

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Congenital Erythropoietic Porphyria (CEP)

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Hepatoerythro­poietic Porphyria (HEP)

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Who we are

Our Mission

The United Porphyrias Association is committed to improving the quality of life of the porphyria patient community and is relentlessly focused on advancing disease awareness, research, and therapies in all the porphyrias.

Our Vision

A world where patients are free from the pain and challenges of porphyria.

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Member Highlight

Victor Mejias

Erythropoietic Protoporphyria (EPP)

"I was diagnosed at the age of 6 with EPP after my parents noticed that every time I was outside I was experiencing anguishing discomfort. I never fully comprehended my diagnosis until I was able to connect with others. With the help of the UPA, I want to be able to help others live more comfortably with EPP and support the vision of a world where patients are free from the pain and challenges of porphyria. "

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Proud Partners in Porphyria Advocacy

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