Global Porphyria Advocacy Coalition

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

Some days with porphyria are so hard to get through. What has helped you keeping going? Follow us to hear the stories of patients like Gabriela and visit myporphyria.org to get your #MyPorphyria templates to share your own #MyPorphyria experience. #GlobalPorphyriaDay American Porphyria Foundation SAPF [South African Porphyria Foundation NPO Reg No: 266-465 United Porphyrias Association British Porphyria Association Canadian Association for Porphyria

From sudden attacks of severe pain and paralysis, sensitivity to sunlight and heat, navigating life with two rare types of porphyria- Hereditary Coproporphyria (HCP) and Variegate Porphyria (VP)- can be exhausting. Hear from HCP and VP patients from around the world about 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/e3E6bb2G 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

Dealing with pain can be an everyday part of life when you have #porphyria. How much do you share about the daily realities of your porphyria? Follow us to hear more stories from people like Kal and visit https://lnkd.in/e3E6bb2G to get your #MyPorphyria templates and share your experience. #globalporphyriaday

But questions like where to sit on the bus take on another level of significance when answer will save you days of pain. What are the little things that porphyria makes challenging for you? Visit https://lnkd.in/eWW8SEVw for more #porphyria stories and to get your shareable template! #MyPorphyria #GlobalPorphyriaDay #GPD2024