Global Porphyria Advocacy Coalition

Porphyria is a group of rare genetic disorders caused by issues with heme production, leading to a buildup of porphyrins in the body. Symptoms vary depending on the type of porphyria, but they often include: ?? Acute Porphyria Symptoms: ?? Severe abdominal pain ?? Nausea, vomiting, and constipation ?? Muscle weakness and numbness ?? Confusion, seizures, and mental health changes ?? Rapid heart rate and high blood pressure ?? Cutaneous Porphyria Symptoms: ?? Extreme sensitivity to sunlight ?? Painful skin blistering and redness ?? Slow healing wounds ?? Increased hair growth on affected areas Because porphyria is rare, it is often misdiagnosed. Early recognition of symptoms and proper testing are crucial for managing the condition. At IPNET - International Porphyria Network, we are dedicated to spreading awareness, supporting patients, and advancing research. If you or someone you know experiences unexplained symptoms, don’t hesitate to seek medical advice. Together, we can make a difference. ??

GPAC are delighted to be sharing news from the IPNET - International Porphyria Network! The International Porphyria Support Group is up and running, they are a clinician-led team working to offer support to clinicians looking after patients with suspected or confirmed porphyria in countries where expert advice is not available. They can directly help with laboratory testing, interpretation of results and management for porphyria cases. Unfortunately, they are unable to accept referrals directly from patients. But, if you are a patient, please share this information with your doctor! Clinicians should complete this webform: https://lnkd.in/gTBdQpQM #PorphyriaMatters #PorphyriaAwareness #GlobalPorphyria

Happy Rare Disease Day to our Porphyria friends from around the world! On this special day, we focus on the many rare diseases and take the opportunity to generate some awareness. Why not talk to just one person about porphyria or share your colours and talk about the impact porphyria has had on you or a loved one! The global porphyria community is strong in advocating collectively to ensure you are not alone with our porphyria! Staggeringly, each one of us is just 1 in the 300 million living around the world with a rare disease!

We are pleased to announce the 2025 International Human Heme Biosynthesis and Porphyrias Research Prize, a prestigious opportunity to advance research in the fields of human heme biosynthesis and the porphyrias. This $250,000 research prize is designed to foster innovation and discovery, with a special focus on supporting early-career investigators. We invite applications from young researchers worldwide who are pursuing groundbreaking basic, translational, preclinical, or clinical research in these fields. Initial applications due February 15, 2025. Learn more and apply at: https://lnkd.in/gqd9SATb #porphyria #porphyriaresearch

It’s always so wonderful to gather our global #porphyria community in person! We’re meeting to discuss how we can better advocate for and support patients around the world ?? to start off the International Congress of Porphyrins and Porphyrias. Thank you to Disc Medicine Alnylam Pharmaceuticals Mitsubishi Tanabe Pharma America and Portal Therapeutics for this meeting possible!

We’re honored to announce that we’ve been selected as a 2024 #RAREis Global Advocate Grant recipient by Amgen's #RAREis program. This recognition underscores our unwavering commitment to the global porphyria community and the rare disease community at large, who inspire us every day with their strength and resilience amid care and research barriers. With this #RAREisGrant, we’re motivated to develop GPAC’s website to include condition-specific content that will be available in many languages (especially important for regions where there are no national porphyria PAGs). Ultimately this resource will enable GPAC to continue raising awareness and expand our efforts in education and advocacy for all those living with and affected by porphyria! #porphyria #rarediseases #porphyriaawareness #porphyriatogether Learn more here: https://bit.ly/3Z6sfSP

This is great news, congratulations! The patient communities in these regions will be keen to know more. Can you share any insights into the countries that Valentech Pharma CLINUVEL PHARMACEUTICALS LTD will be working in, with regards to creating access to Scenesse?

In honor of Global Porphyria Day, we recently heard from people with erythropoietic protoporphyria (EPP) and X-linked protoporphyria (XLP) about their experiences living with this debilitating condition and what they believe needs to continue to be addressed for the community. Learn more about how to support through the United Porphyrias Association and the Global Porphyria Advocacy Coalition. #MyPorphyria

Its #GlobalPorphyriaDay – help us to raise awareness of #Porphyria and get involved in sharing your #MyPorphyria journey! Check out this wonderful collaboration with Alnylam Pharmaceuticals and @Katriparra: https://lnkd.in/eGDWJTgr @Katriparra you are incredibly brave for sharing your porphyria journey! From #paralysis to #PorphyriaWarrior!?I’m delighted to be part of this #GlobalPorphyriaDay awareness campaign alongside you both to raise awareness and of #acuteporphyria. #PurpleforPorphyria #GlobalPorphyriaDay #AcutePorphyria #AcuteIntermittentPorphyria #RareDiseaseAwareness #PorphyriaSymptoms Inspired to share your story?? Check out https://lnkd.in/e3E6bb2G to get involved #GlobalPorphyriaDay !!

Severe pain, nausea, seizures and paralysis are just some of the bewildering array of symptoms when you live with Acute Intermittent Porphyria (AIP). Hear from AIP patients from around the world what it’s like to live with their porphyria. The #MyPorphyria campaign goes beyond the list of symptoms to highlight the realities of living with #porphyria. Check out other patients' stories and learn how you can get involved by visiting https://lnkd.in/gq4zWXZf Thank you to all the patients who shared their story and our supporters Alnylam Pharmaceuticals, Disc Medicine, Mitsubishi Tanabe Pharma Corporation. Canadian Association for Porphyria, United Porphyrias Association, British Porphyria Association, American Porphyria Foundation, National Association of Porphyrias Serbia, SAPF [South African Porphyria Foundation NPO Reg No: 266-465 #raredisease #globalporphyriaday #porphyriaawareness