United Porphyrias Association

💜 One thing about porphyria… Behind every diagnosis, there’s a real person with a story, a struggle, and a voice that deserves to be heard. For #GlobalPorphyriaDay members of our community came together to share ONE thing they wish the world understood about porphyria. Some of these truths are painful. Some are hopeful. All of them matter. Thank you to every warrior who shared their voice with us today! ✨ Share this video to help raise awareness and make porphyria visible. #OneThingPorphyria #Porphyria #RareDisease #PorphyriaAwareness

Share the one that resonates with you the most 💜 Today, for Global Porphyria Day, Porphy is helping share some of the realities patients live with every day, from invisible pain to sunlight sensitivity, delayed diagnoses, paralysis, and more. Every voice helps raise awareness! ✨ Don’t forget to tag us and use #OneThingPorphyria #GlobalPorphyriaDay #Porphyria #RareDisease #InvisibleIllness #PorphyriaAwareness

It’s Global Porphyria Day! 💜 Today is about raising awareness, sharing our voices, and helping the world better understand porphyria. Complete the sentence: “One thing I wish you understood about porphyria is…” 📸 Take a screenshot, fill it in, and share it however you’d like! You can also download the full toolkit, templates, frames, and graphics to create your own here: https://lnkd.in/gxiGJby4 🗣️Let’s make porphyria visible together! #porphyria #porphyriaawareness #globalporphyriaday #chronicillnessawareness

Tomorrow is #GlobalPorphyriaDay 🌎 And this year, we want the world to hear ONE thing: ✨ #OneThingPorphyria ✨ Tomorrow, we invite our entire community to post a photo or video sharing: “One thing I wish you understood about porphyria is…” (adding your answer!) 💜 We’ve also sent more than 500 purple ribbons around the world to help raise awareness together. So tomorrow is the day 👀 Wear your ribbon. Wear purple. Share your story. Raise awareness. 💫 Don’t forget to tag @unitedporphyrias and use #OneThingPorphyria so we can share your posts! 👉 Visit https://lnkd.in/gxiGJby4 to download our Global Porphyria Day Toolkit, including GPD frames and images you can use and share tomorrow. Let’s make porphyria visible... together! #porphyria #raredisease #porphyriaawareness #chronicillnessawareness

Join us for a special edition of What’s Up Doc? 💜 This Sunday, May 17 at 11:30 AM ET, porphyria expert Dr. Bruce Wang will be LIVE in our Facebook group answering your questions about porphyria. This special session is part of our #GlobalPorphyriaDay awareness efforts, and it’s your chance to connect directly with an expert and ask questions in real time. 📍Join our Facebook group and don’t miss this LIVE conversation: https://lnkd.in/gMP7ANJe Bring your questions, your curiosity, and join us for this important discussion 💬 #Porphyria #chronicillness #RareDisease #PorphyriaAwareness

Hi 👋 Many of you know me as the person behind UPA’s social media… but today, I want to share something deeply personal with you. After everything I’ve lived through with Acute Intermittent Porphyria, I finally wrote my first book: 📖 Atrapada en Mí: Un mundo extraño llamado porfiria (Trapped Within Me: A Strange World Called Porphyria) This book tells my story: the paralysis, the fear, the recovery, the emotions, and everything I wish someone had told me when I was going through it. AVAILABLE ON AMAZON ✨ This first version is currently available in Spanish, but an English version is coming soon! And this Saturday, May 9 at 6:30 AM ET, I’ll be doing a special ConnectUp live during my book presentation. I know it’s very early for many of you 😭 but if you’re awake, it would honestly mean the world to have you there with me. 👉 This is the link to join the zoom meeting (tomorrow at 6:30AM ET/12:30PM Madrid) https://lnkd.in/gt6yp_Wd Thank you for being part of my journey and for allowing me to share my heart with this community 💜 I also want to say thank you to UPA for giving me SO MUCH support and a home to do what I love most: giving a voice to porphyria and helping others feel less alone 🫂 #porphyria #raredisease #advocacy #booklaunch #youarenotalone

Reminder for our creative community 💜🎨 Our International Porphyria Art Challenge is still open, and you could win up to $1,000 👀 The challenge is open to: - Patients - Caregivers - Family members - Healthcare providers - Researchers - Advocates …from anywhere in the world 🌍 📅 Submission Deadline: Sunday, May 17 at 11:59 PM EDT 👉 Submit your piece here: https://lnkd.in/gSQ3FK5N We can’t wait to see what you create! #porphyria #porphyriaawareness #artchallenge #art #raredisease

Have you seen? 👀Our latest eNews is out! Check it out: https://conta.cc/3OVe5kG Inside you’ll find: 🎨 Join our Art Challenge 🌍 Get ready for Global Porphyria Day ☀️ Sun Escape is coming 💊 Treatment updates …and more 💌 Not subscribed yet? Join our eNews and stay connected: https://lnkd.in/ghCKRqJm #porphyria #raredisease #patientsupport #wareness #chronicillness

In honor of Global Porphyria Day, we invite the global porphyria community to help tell the story of porphyria through art! All forms of creative expression are welcome, including visual, digital, literary, performance, design, and experimental arts of any kind. Submit your creative work by May 17, 2026! A total of $2,000 in prizes will be awarded. Learn more at: https://lnkd.in/gSQ3FK5N Every day, the porphyria community shows us the power of strength, support, and self-expression. We cannot wait to see what you create for this challenge! Thank you to Recordati Rare Diseases North America supporting of this initiative.

In this beautiful piece, Holly Hamilton shares what it truly means to love, support, and build a life together through challenges, caregiving, and unwavering commitment. It’s a story about choosing each other, not just on the easy days, but on the hardest ones too. About partnership, resilience, and the kind of love that shows up, every single day. 👉 Read the full story: https://lnkd.in/giH-JFBx #porphyria #caregivers #love #raredisease #youarenotalone