We're delighted to see the report below National Voices It validates the experiences we sadly hear from many patients here in the UK and GlobalPorphyria in terms of challenges and delays to diagnosis, as well as continued problems post-diagnosis! Thank you, such important work!

📣 LAST CALL! We have a few places left for BPA Connect Alfresco 2024: a sun-safe outdoor activity weekend for children & young people affected by EPP! To confirm your place please contact [email protected] by 26 June 2024 🌲 #PorphyriaTogether

SUNSCREEN UPDATE: Unfortunately, production of Dundee Cream has stopped due to supply issues. While we work on finding other prescription options, there are some other sunscreens available to purchase which may provide some relief. Find out more at porphyria.org.uk/skin-safety ⛱️

Great resource for our community members who are sun-sensitive! Every little bit helps💜

We discussed acute porphyria in depth with world expert Dr. Karl Anderson from UTMB Health. American Porphyria Foundation British Porphyria Association United Porphyrias Association m.youtube.com/watch?v=AIe-YA…. Stay in tune Bone Marrow Failure Cases for further expert case discussion series. Devotion to classical hematology

📢 Did you miss out on a place in the TCS London Marathon ballot? We have a spot available on #TeamBPA! If you're up to the challenge & can commit to raising £2000, get in touch today at [email protected] or visit porphyria.org.uk/fundraising-sp… for more information 🏅 #CareForRare

Do you have one of the skin porphyrias & a few minutes to spare? University of Dundee wants to hear from you! Help improve #Porphyria care by taking part in this important survey on sunscreens: ow.ly/7oPC50Sy9rP 💬 United Porphyrias Association Canadian Association for Porphyria American Porphyria Foundation GlobalPorphyria

Does porphyria affect your skin? Help improve porphyria care by participating in the short survey!

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

We're delighted to join the growing global network of patient groups partnering with Cambridge Rare Disease Network (CamRARE) to bring their ‘This Is Me’ #RarePatientPassport to the #Porphyria community! Sign up today at forms.gle/ggp9afsaH8p8Ez… 🌍 #RareDisease #CareForRare #MyPorphyria

We are pleased to share two new factsheets from the Scottish Photobiology Service to help you advocate for #Porphyria awareness with your employer & GP: - Employer’s Information Card - Red Flags Card for GPs Download today at porphyria.org.uk/factsheets 💜 GlobalPorphyria

Nominate the British Porphyria Association today to see if we can win £1,000 in the Benefact Movement for Good draw. ow.ly/aHjq50SSIfA

If symptoms of porphyria are affecting your daily life (including your ability to work), you may be trying to tackle the benefits system for the first time. We can help. For information on the kinds of help available, visit porphyria.org.uk/get-support 💜 #RareDisease #CareForRare

The BPA are delighted to confirm receipt of a further batch of Cyacelle from CLINUVEL - thank you so much for this kind donation! If you have EPP/XLP, CEP, PCT, HCP or VP and would like a bottle, visit our Facebook page to find out how: facebook.com/Britishporphyr… 🏖️

Good luck to our amazing five superstars who are running the #GreatNorthRun2024 today! Thank you so much for all your training and fundraising for the BPA! Good luck #TeamBPA John Critchley Becky Lines Carly Brearley Jack Livingston Anna-May Livingstone

🔥Emoroid Digest🔥 Explore the visual summary by Cynthia on the latest @amergastroassn best practice advice for the diagnosis, treatment, and long-term management of patients with acute hepatic porphyrias. AASLD Foundation American Porphyria Foundation British Porphyria Association ACG

Thank you so much to our five amazing fundraisers John, Becky, Anna-May, Jack and Carly, who took part in the Great North Run for #TeamBPA on Sunday! Please join us in congratulating them on their huge achievement 🏅 #PorphyriaTogether #CareForRare GlobalPorphyria

We are so excited to be representing the BPA at the International Congress of Porphyrins and Porphyrias this week in beautiful Pamplona, Spain! We’ll be here until the 25th & can’t wait to get stuck in to all the fascinating sessions - watch this space for updates! 🧬 #ICPP2024