PHASE 3 INSPIRE STUDY FOR DERSIMELAGON NOW RECRUITING PARTICIPANTS
Eligible participants must have EPP or XLP diagnosis, have not previously received dersimelagon, 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 firstname.lastname@example.org with any questions.
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:
These data were presented at the European Hematology Association 2023 Congress in Frankfurt, Germany. More details about the results are available HERE.
INSPIRE STUDY VIRTUAL INFO SESSION - WEDNESDAY, NOVEMBER 29 – 6-7 PM ET
Join Dr. Bruce Wang to learn about the new dersimelagon Phase 3 trial for EPP and XLP from Mitsubishi Tanabe, including: the science behind the treatment; what to expect if you participate in the trial; and eligibility requirements. All are welcome! Please register in advance.
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!
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.
A world where patients are free from the pain and challenges of porphyria.
"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. "