UPdates

PRELIMINARY FINDINGS RELEASED FOR BITOPERTIN
Disc Medicine recently shared preliminary findings from its ongoing, Phase 2 open-label BEACON trial in Australia which is evaluating bitopertin in patients with EPP and XLP. Early results found:

• Bitopertin consistently decreases protoporphyrin IX
• Patients had significant increases in reported sunlight tolerance and quality of life
• Bitopertin was well-tolerated with no serious adverse events, no reported discontinuations or dose reductions, no adverse events greater than Grade 1 (mild), and no meaningful changes in observed in mean hemoglobin level

These data were presented at the European Hematology Association 2023 Congress in Frankfurt, Germany. More details about the results are available HERE.
 

INTERESTED IN PARTICIPATING IN THE BITOPERTIN TRIALS?
The phase 2 AURORA trial in the US for bitopertin is still recruiting participants! Participants must have EPP, live in the US or Canada, be over 18 and meet additional eligibility requirements. ?Please complete an INTEREST FORM. Your response is completely confidential, only for designating your interest in further information. You're also free to call our office at 800-868-1292 or email us at info@porphyria.org. 

UPA ON YOUTUBE – SCIENTIFIC ADVISORY BOARD VIDEO SERIES
The UPA Scientific Advisory Board contributed to a video series highlighting responses to questions regarding porphyria diagnosis, management, and treatment. Access videos HERE.

UP and Coming

LET'S CONNECT! NEW ONLINE COMMUNITY

You're invited to our new Discord server - a safe, welcoming space for the porphyria community. Join us to share your experiences and tips, learn from others and gain support from fellow porphyria patients. Discord is an intuitive platform where you can chat in topic-specific channels, use direct messages and voice call, access resources, and find solace. Let's navigate this journey together!
JOIN the Porphyria Discord
 

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. UPA is pleased to launch Connect Up small group meetings for patients and caregivers to connect and socialize with others in a safe and inclusive environment. Connect UP groups will be peer-led and offered regularly over Zoom. SIGN UP HERE.
 

PORPHYRIA TOGETHER ON FACEBOOKWe welcome you to join Porphyria Together, a new closed Facebook group where you will find helpful information in a safe community setting. JOIN US online!

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