Launch of our 2024 Super Rare Campaign
Welcome to Super Rare!
1 February – 31 March 2024
Did you know that people living with PNH or other rare conditions, are over four times more likely to be lonely than the general population?
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.
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 t-shirt!
Order your fundraising pack: https://super-rare.org/start-fundraising-now
“I never know how I’m going to feel on a certain day so I just have to run with it and hope for the best.”
In this video Jovita talks about what it was like for her to be diagnosed with PNH as a teenager. Our Super Rare campaign means that our small charities can raise funds to support people affected by PNH and other rare conditions, through diagnosis and beyond. Last year Jovita battled her fatigue to climb Bennachie to raise money for PNH Support!
NEW: Super Rare at School!
If you know a child of Key Stage 2 age (Years 3, 4, 5 & 6) at school who is impacted by PNH or another rare condition, then check out our brand new Super Rare schools pack!
We’ve worked with teachers to create a new pack for educators of children of Key Stage 2 age. It’s designed to teach children how to empathise with and include people who might be living with a rare condition. The pack includes:
- How to support a Super Rare Pupil – Including your school’s 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.
Get the Super Rare schools pack here
We can’t wait to see how you choose to join in this year, thank you so much for all your support!