A huge thank you to Sam Clayton & Emily Broderick for their fantastic efforts in completing the Manchester Half Marathon & raising a whopping £2,450 for PNH Support in honour of Sam's grandfather.
As a micro charity we appreciate any & all fundraising support 🫶
#fundraising #pnhsupport
Live from from the PNH Global Advocacy Forum. This weekend, patients and advocates are uniting in Barcelona, Spain, to build capcity for wider global advocacy. Community matters—together we are stronger and can drive real change.
#PNHGlobalAdvocacyForum #PNHAwareness2025 #PNHSupport
Managing PNH often takes a mix of treatments. Transfusions ease symptoms, supplements support blood cell production, and anticoagulants help prevent clots. Complement inhibitors protect cells, but access is limited. Global awareness and advocacy are still urgently needed.
#PNHAwareness #PNHSupport
Let’s talk symptoms.
PNH is rare, but its symptoms are very real and often misdiagnosed. Fatigue, dark urine, pain, or clots could be overlooked.
Patients & HCPs: If signs don’t add up, ask: could it be PNH?
#PNHAwareness #PNHSupport
You’re not alone with PNH. Support groups offer connection, hope, and strength for patients and caregivers. Find yours today: pnhglobalalliance.org/resources/gl... 💜
#PNHSupport #PNHCommunity #LivingWithPNH #SupportGroups
PNH specialists are key to better health outcomes. 👩⚕️ Find the right care with our interactive map to connect with specialists near you! 🗺️
Access this valuable resource here: pnhglobalalliance.org/resources/ex...
#PNHSpecialists #PNHSupport #LivingWithPNH
Lucas has organised a walk three years in a row and got involved in Super Rare. Thank you Lucas!
How will you get involved?
super-rare.org
#pnhsupport #raredisease #superrarebutnotalone
Continue to support PNH in March- let's make these last weeks count! 🙌
You’re helping to connect and uplift those living with PNH. Let’s stand together! 💜
Learn how you can help: super-rare.org
#SuperRare #RareDisease #RareDiseaseDay #PNHSupport #PNH
Imogen became an Alpaca Farmer for the afternoon and raised £250. Thank you Imogen.
There is still time to get involved in Super Rare 2025 and support PNH Support. What will you do?
super-rare.org
#SuperRare #pnhsupport #RareDisease #PNHUK
Harriet & Eleanor got involved with Super Rare last year and held a bake sale at their school. Could you get your School or workplace involved and support PNH this February and March?
super-rare.org
#superrare #raredisease #RareDiseaseDay #pnhsupport #pnh
Alex ran and cycled 13 miles last year, dressed as a Zebra!
How will you get involved in February and March and help bring people affected by PNH together?
super-rare.org
#superrare #raredisease #RareDiseaseDay #pnhsupport #pnh
