British Porphyria Association

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! We are so grateful for all their hard work and dedication to raising awareness and funds for #Porphyria and #RareDisease. Please join us in congratulating them on their huge achievement! There's still time to donate to the cause if you can via the BPA's fundraising profile at https://lnkd.in/e5fhxqqU (scroll down to the bottom of the page and you'll see all 5 runners' profiles!) 🏅 #MyPorphyria #PorphyriaTogether #GreatNorthRun #RareDisease #CareForRare #ThinkRare Global Porphyria Advocacy Coalition

The BPA are delighted to confirm receipt of a further batch of Cyacelle from Clinuvel! Keep reading to find out how to get yours... We would like to take this opportunity to say a HUGE thank you to CLINUVEL PHARMACEUTICALS LTD, on behalf of the #Porphyria community – the very generous and kind donation of these creams have already helped so many skin porphyria patients in the UK and Ireland over the last few weeks! If you have EPP/XLP, CEP, PCT, HCP or VP and would like an additional bottle of Cyacelle, or didn’t get one sent the first time, we would be very happy to send one out to you. In return we are asking, if financially possible, for you to make a small donation to help cover the postage and packaging incurred by the BPA for sending out these items. The suggested donation is £5.00 per Cyacelle product, but larger or regular donations are also very welcome. Just follow these easy steps: 1. Make a suggested donation of £5.00 to cover P&P (per Cyacelle) via Just Giving or directly to the BPA Bank Account. You can: Pay via JustGiving: https://lnkd.in/efrwQGU6 (or use the QR code in the image of this post) OR Make a bank payment to: Account Name: The British Porphyria Association Sort Code: 20-43-63 Account Number: 70996904 Reference: Cyacelle-surname 2. Please email Kathryn Wilson at the BPA on kathryn.wilson@porphyria.org.uk and provide the following details: • Your name: • Your full address: • Your porphyria type: • Confirm how you have made a donation: (Just Giving or Bank Account) Please note, the Cyacelle items will be sent out on a first come, first served basis, until they have all been dispatched. Many thanks again to Clinuvel from the BPA and, on behalf of the skin porphyria community, for these donations/support. #PorphyriaTogether #CareForRare #RareDisease

Join us for a webinar on the critical step of delivering a rare disease diagnosis. A timely and compassionate approach can empower families, while poor communication may lead to distress and mistrust in the healthcare system. Experts from European Reference Networks, including ERN CRANIO , ERN-EYE, and VASCERN, European Reference Network on Rare Multisystemic Vascular Diseases, will share real cases and best practices, followed by a panel discussion. Learn from leading specialists on how to deliver a rare disease diagnosis effectively. 💬 Mental health open webinar: How to deliver a diagnosis 🗓️ 23 October, 2024 ⏰ 2:00pm CET ➡️ https://lnkd.in/e-DeA2E8 #MentalHealth #webinar #MentalWellbeing #EuropeanReferenceNetworks #diagnosis

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, including how to apply for a Blue Badge and Access Card, visit https://lnkd.in/eiqNdDtB 💜 #RareDisease #CareForRare #MyPorphyria #PorphyriaTogether Global Porphyria Advocacy Coalition

Could you take 30 seconds to nominate the British Porphyria Association today? Let's see if we can win £1,000 in the Benefact Movement for Good draw.. https://ow.ly/CJZ150SSIfR

We are pleased to share two helpful new factsheets on light sensitivity created by the Scottish Photobiology Service: • Employer’s Information Card • Red Flags Card for GPs The factsheets have been created in collaboration with light-sensitive patients to help you advocate for #Porphyria awareness with your employer and healthcare practitioners. They provide comprehensive information of light sensitivity conditions to help you navigate difficult conversations about your care and remind others about access needs which might be invisible. Download the factsheets today at https://lnkd.in/esbE_6CM 💜 #RareDisease #CareForRare #MyPorphyria #PorphyriaTogether Global Porphyria Advocacy Coalition

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! This personalised health & care passport is designed to help communicate your key medical & care information in an emergency, away from home or when meeting new people. Find out more and sign up for yours at https://lnkd.in/eWr-gVTZ 🌍 #PorphyriaTogether #MyPorphyria #CareForRare #RareDisease Global Porphyria Advocacy Coalition

Looking for ways to support our work advocating for the #Porphyria community? We have 3 charity places to give away for the #BrightonMarathon taking place on 6 April 2025. Join #TeamBPA and get training now to help raise vital funds and awareness for #Porphyria and #RareDisease! To secure your place and find out just how rewarding fundraising can be, visit https://lnkd.in/ekB8gffJ 🏅 Please share with any friends and family who love a challenge! #CareForRare #MyPorphyria #PorphyriaTogether #Fundraising [Video description: A video of a large number of people running a marathon. White text in red and blue text boxes reads, “We have three charity places to give away for the 2025 Brighton Marathon. Will you join #TeamBPA? https://lnkd.in/e_TsK2fZ. The BPA logo is in the top right corner.]

Do you have one of the skin porphyrias & a few minutes to spare? The Scottish Photobiology Service wants to hear from you (you do not need to live in Scotland to take part)! Help improve care for #CutaneousPorphyria by taking part in this important survey about your use of sunscreens as a tool for managing skin symptoms caused by #Porphyria. To find out more and complete the survey, visit: ow.ly/7oPC50Sy9rP 💬 #MyPorphyria #PorphyriaTogether #CareForRare #RareDisease Global Porphyria Advocacy Coalition

The BPA are SUPER EXCITED to be sending out full-sized samples of Clinuvel's Cyacelle Polychromatic Photoprotection Cream to our Members . HUGE THANK YOU to CLINUVEL PHARMACEUTICALS LTD for donating all of these products to EPP/XLP, VP, HCP, PCT and CEP patients in the UK!!! Opt-in now: https://lnkd.in/eYqhMn5e Eeeekkkk - SUPER EXCITED!!