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pnhsupport.bsky.social
@pnhsupport.bsky.social
13 followers 8 following 23 posts
We are a patient led charity (1161518) supporting those with paroxysmal nocturnal haemaglobinuria (PNH) in England, Wales and Northern Ireland. www.pnhuk.org or contact@pnhuk.org
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pnhsupport.bsky.social
Shop with over 8,000 retailers via #easyfundraising this Christmas and earn a free donation for us at the same time.

All the big names are ready to donate. It won't cost you anything extra!

Please sign up today and we could win a massive £1,000 donation: join.easyfundraising.org.uk/pnh-support/...
December 15, 2025 at 12:25 PM
pnhsupport.bsky.social
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
October 24, 2025 at 10:51 AM
pnhsupport.bsky.social
IPIG is validating the QLQ AA/PNH-54 quality of life questionnaire, the first disease-specific PROM for PNH & Aplastic Anemia. Watch out in case you are invited to take part.
#PNH #PatientReportedOutcome #PROM #PNHResearch #PNHAwareness2025 #DidYouKnow
October 7, 2025 at 12:50 PM
pnhsupport.bsky.social
In episode 3 of our Rare Voices Podcast, Cameron who is living with Shwachman Diamond Syndrome, Shabraz who is living with Fanconi Anaemia and Naomi who living with sickle cell anaemia, discuss how they find psychological support.

Listen now: super-rare.org/podcast
June 30, 2025 at 8:54 AM
pnhsupport.bsky.social
How can parents manage this anxiety and ensure they’re giving their child the support that they need? Listen to Episode 2 of our Rare Voices podcast to hear three parents discussing their approaches.

Listen now: www.super-rare.org/podcast
June 19, 2025 at 12:27 PM
pnhsupport.bsky.social
Have you heard episode one of the podcast yet? Listen to Naomi, Jovi and Shah share what they wish people knew about living with an ultra rare bone marrow related condition.

Search for Rare Voices Podcast or go to super-rare.org/podcast/
June 6, 2025 at 8:00 AM
pnhsupport.bsky.social
What is it like living with a rare blood or bone marrow disorder? Episode one discusses what it’s like to live with a rare condition day-to-day, from home life, work, going out, dealing with the healthcare system and more.

Listen now: super-rare.org/podcast
June 3, 2025 at 12:42 PM
pnhsupport.bsky.social
Introducing the Rare Voices podcast! To listen, search for the Rare Voices Podcast on your podcast app of choice, or visit super-rare.org/podcast. Your feedback is really important, we have a feedback form on the page: super-rare.org/podcast.
May 29, 2025 at 12:31 PM
pnhsupport.bsky.social
Listen to our Rare Voices podcast to hear from people living with rare conditions about the challenges they face – and overcome.

super-rare.org/podcast
May 27, 2025 at 12:13 PM
pnhsupport.bsky.social
Introducing the Rare Voices podcast! Listen wherever you get your podcasts to hear from people affected by our rare condition, and other similar ones.

This joint project with our partner charities is funded by @tnlcomfund – thank you to players of The National Lottery!

super-rare.org/podcast/
May 22, 2025 at 9:31 AM
pnhsupport.bsky.social
Look at these Super Rare Splashers! A few weeks ago they braved the cold water and got involved in Super Rare 2025.

Thank you!!”

#SuperRare #RareDiseases #SuperRare2025
April 1, 2025 at 12:29 PM
pnhsupport.bsky.social
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
March 26, 2025 at 9:15 AM
pnhsupport.bsky.social
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
March 14, 2025 at 9:37 AM
pnhsupport.bsky.social
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
March 11, 2025 at 12:46 PM
pnhsupport.bsky.social
It’s Rare Disease Day!
Having a rare condition can be frustrating, you have to explain what the condition is over and over again. If you or someone you know has PNH, why not share this post for Rare Disease Day and spread awareness of PNH.
pnhuk.org
super-rare.org
#SuperRare #RareDisease
February 28, 2025 at 7:38 AM
pnhsupport.bsky.social
Andrea held a fabulous event at her local church. She raised over £1000 for PNH Support and The Aplastic Anaemia Trust. Thank you Andrea!

If Andrea has inspired you to get involved and support PNH, why not download a fundraising pack and set up a Super Rare fundraising page?

super-rare.org
February 27, 2025 at 11:05 AM
pnhsupport.bsky.social
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
February 17, 2025 at 2:56 PM
pnhsupport.bsky.social
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
February 11, 2025 at 1:33 PM
pnhsupport.bsky.social
Super Rare is Coming! What will you do?

Download the fundraising pack for inspiration and ideas on how you can raise money, and help bring people affected by PNH Support together in our 10th year.

Raise £200 and we’ll send you a Super Rare t-shirt.

super-rare.org/charity/pnh-...
January 30, 2025 at 2:11 PM
pnhsupport.bsky.social
Join us for a Managing Stress course that helps you deal with the stress and uncertainty of living with conditions supported by us, CAN, SDS UK, @dcaction.bsky.social, Fanconi Hope or the Aplastic Anaemia Trust. 6 week course starting 12 February at 6pm www.theaat.org.uk/Event/managi...
January 20, 2025 at 9:56 PM
pnhsupport.bsky.social
This webinar is designed to help our community find the confidence to advocate for themself or their loved one, and the words when they need them.
www.theaat.org.uk/Event/webina...
January 20, 2025 at 9:53 PM
pnhsupport.bsky.social
Super Rare 2025 is coming! How will you get involved? Raise £200 for PNH Support in February and March and earn your t-shirt.
super-rare.org/charity/pnh-...
January 20, 2025 at 9:50 PM