Looking for ways to support the #Porphyria community? We have 3 places to give away for the Brighton Marathon Weekend on 6 April 2025! Join #TeamBPA to help raise awareness and funds for #RareDisease at porphyria.org.uk/fundraising-sp… 🏅 GlobalPorphyria #PorphyriaTogether

🌲It's beginning to look a lot like Christmas! Visit the BPA shop for a selection of festive cards & decorations to deck the halls this holiday season: ebay.co.uk/usr/lizgill_bpa. Every purchase raises vital funds needed to support families affected by #Porphyria!🎁💖

Do you have EPP or XLP and 30 minutes to spare? A biotech company studying a potential treatment option for the EPP and XLP community wants to hear from you! Help improve care for #Porphyria by taking part in this important survey: surveymonkey.com/r/ClinicalTria… 💬 GlobalPorphyria

🌲 Have an eco-friendly Christmas and raise money for the BPA by sending ecards with DontSendMeACard.com & donating the cost of printed cards & stamps! Find out more at dontsendmeacard.com/ecards/chariti…🎁 #PorphyriaTogether #CareForRare #RareDisease #ChristmasCards

An online health education program significantly reduced acute attacks and improved health in acute intermittent porphyria (AIP), per a study. buff.ly/3Zs0cwM

🌲 Don’t forget to get your orders in before 15 December for festive cards and decorations - every purchase raises vital funds needed to support families affected by #Porphyria! This Christmas, let’s make a difference together. Visit the BPA shop at ebay.co.uk/usr/lizgill_bpa 🎁💖

🎄 Have you seen our custom BPA Christmas ecards? Choose from our selection of designs & donate the cost of printed cards and stamps to – every donation raises vital funds for #Porphyria: dontsendmeacard.com/ecards/chariti… 💝 @DontSendACard #CareForRare #RareDisease #ChristmasCards

Did you attend BPA Connect Alfresco in October? If you haven’t already filled in a feedback form, we’d love to hear your thoughts. Form for activity participants: forms.office.com/e/L9Zuf0XaSV Form for parents/carers/other attendees: forms.office.com/e/YewhEvBGLi Thank you!

The BPA has partnered with @BetterHelp and BetterHelp Teen Counselling, who have kindly donated to the BPA six months of free therapy to support #Porphyria patients to start on their wellness journey. To learn more, visit porphyria.org.uk/betterhelp 💚 #CareForRare #RareDisease

One aspect of the #RareDiseaseDay campaign is raising awareness. Our school toolkits help educate young people of all ages about the experiences of the rare disease community and the importance of advocacy in ways that keep them engaged. Find them here: rarediseaseday.org/downloads/scho…

Happy holidays from all of us at the BPA! Our office will be closed between 23 December and 2 January for the winter break. Thank you for all your support of our work this year, and we look forward to building even more #Porphyria community in the New Year! #PorphyriaTogether

Interested in taking part in research and fit the following criteria? 18-39 year-old? Female? Have EPP or XLP? Your EPP/XLP reacts to light within 30 minutes? Available to travel to London on 30-31 Jan? Can take part in an online interview? Contact [email protected]

We are proud to be profiled in the new edition of RARE Revolution Magazine®, out today! Read about how we’re working with our international networks to improve life for people with #Porphyria in the UK at bit.ly/RARE-Metabolic… 🧬 #PorphyriaTogether #CareForRare GlobalPorphyria

📰 Have you read our latest newsletter? Visit porphyria.org.uk/newsletters to access the full issue & catch up on all things #Porphyria, including the full Alfresco debrief, upcoming events, cutting-edge research, and how you can get involved with fundraising in 2025! #CareForRare

📅 SAVE THE DATE! We are pleased to announce our next patient event on Saturday 29 March 2025 at the National Museum of Wales in Cardiff. Patients, their families/friends, and medical professionals are all welcome. Full programme TBC - register at porphyria.org.uk/conferences 🏴󠁧󠁢󠁷󠁬󠁳󠁿

🌲 In October 2024, we held our first Alfresco Residential for those affected by EPP and XLP, bringing together children, young people, and parents with EPP from across the UK and Ireland. Read the full story in our latest newsletter at porphyria.org.uk/newsletters 📰

🎮 Win a Nintendo Switch! Play our Porphyria Awareness Day raffle before 18 May and help raise funds to support people with porphyria. ow.ly/xZTB50VQ659 Keep a look out for more impressive prizes being announced this weekend! 💜 #PorphyriaSupport #PlayForGood

🎟️ Fancy winning a brand new iPad? Enter our Porphyria Day raffle by 18 May and support families affected by porphyria across the UK & Ireland! ow.ly/oezA50VQ7GV 💜 #GlobalPorphyriaDay #RaffleForACause Thank you to our amazing sponsors ow.ly/LaUW50VQ7GW

Help raise awareness today AND support our raffle! Play and support a great cause today at peoplesfundraising.com/raffle/GPD-raf… 🎟️ Thank you for sharing your #MyPorphyria story, Natassja! #PorphyriaTogether #CareForRare #RareDisease

Thank you for supporting Global Porphyria Day! Whether you shared a post, watched a video or played in the BPA raffle, we appreciate it! You raised a fabulous £1902! Check Facebook or our website for the winning numbers!