Super Rare 2025 for SDS UK
Organised by SDSUKRaise £200 and we’ll send you a Super Rare t-shirt. Plus this year when you earn your t-shirt, we’ll also display your name next to your chosen Rugby shirt in the Rycroft Collection.
Story
During February and March raise money and fund research for future treatments for Shwachman Diamond Syndrome.
Join in with Super Rare our annual fundraising campaign, celebrate Rare Disease Day and raise money and fund research for future treatments for Shwachman Diamond Syndrome.
Raise £200 and we’ll send you a Super Rare t-shirt.
Plus this year when you earn your t-shirt, we’ll also display your name next to your chosen Rugby shirt in the Rycroft Collection, a collection of rugby jerseys that Andrew Rycroft's Father has collected over a number of years.
"Our baby boy Rycroft died at Great Ormond Street Hospital in June 2023. He was 16 months and two days old. When he was diagnosed at three weeks old with Shwachman-Diamond syndrome (SDS), the implications were stark. There was no cure and even at that early stage, we knew that Rycroft might live a shorter life because of it. We hoped with all of our hearts that we would get more time with him. But we never got to see him take his first steps. We never got to see him ride a bike ,or hear about his first day at school. The list of moments taken from us by SDS is too long and painful to contemplate.- Andrew, Rycroft's father
Find out more about the Rycroft Collection here.
How will you get involved?
You may choose to Walk, run, bungee or bake. Whatever you do, you will be funding research for future treatments for Shwachman Diamond Syndrome
Rycroft Rugby Rumble
Join us for a family fun day on the 12th April. You could even get sponsorship and join in. Put a rugby team together and take part in the Rycroft Rugby Rumble. Get in touch with Hannah to find out more info@super-rare.org
