Super Rare Campaign 2025
How will you get involved?
Celebrate Rare Disease Day (28th February) and help bring people affected by PNH together during our 10 year anniversary year.
The money you fundraise during February and March, will support those with PNH and their families including providing them with information, advocating on their behalf and making sure no one feels alone.
Super Rare is our chance to connect with people who have had similar experiences, raise money for PNH Support and spread the word about our Super Rare conditions and how they impact our lives.
By organising a walk with a few friends, you could pay for us to hold a patient and family day or host more face-to face meetings. By holding a raffle, you could put in place long term emotional wellbeing support services for our community. By walking up a mountain, you can ensure that someone living with PNH can get expert advice on how to navigate the benefits system. By holding a coffee morning, you could help us gather data, needed to evidence that new treatments being developed to address the symptoms of PNH are worthwhile and improve patients’ (and also their families) lives.
So, sign up for an event, organise one, or order your fundraising pack now to start planning how you can get involved during February and March and earn your exclusive Super Rare t-shirt!
Join in with Super Rare our annual fundraising campaign and celebrate Rare Disease Day. Raise £200 in February and March and we’ll send you the t-shirt below.
Make a Donation
You can choose to just make a donation to PNH Support without fundraising or taking part in an activity. Please do this through our Justgiving page here
Join Maria on a walk through Epping Forest on the 1stMarch
Join Maria, on a beautiful gentle walk-through Epping Forest. For more details and to sign up join visit East London Epping Forest Super Rare Walk 2025 – 1 March 2025 – PNH Support
Super Rare at School!
If you know a child of KS2 age at school who is impacted by PNH or another rare condition, then check out our Super Rare schools pack!
We’ve worked with teachers to create a new pack for educators of children of KS2 age. It’s designed to teach children how to empathise with and include people who might be living with a rare condition.
Last year we saw schools hosting back sales and walking challenges.
Download the Schools Fundraising Pack now For schools – Super Rare – But not alone
This pack includes:
How to support a Super Rare Pupil: including your schools statutory requirements, how to create a care plan around the child’s physical and emotional needs, and advice on how to talk to your other pupils about the child’s, or their family members’ condition.
Teaching materials: including a full assembly presentation and notes, to explain Super Rare conditions by talking about rare animals and a colouring page.
Fundraising and awareness resources: everything you need to hold a fancy dress Super Rare day at your school, more fundraising ideas, template letter to parents and guardians, posters, postcard activity and bunting.
We can’t wait to see how you choose to join in this year, thank you so much for all your support!