Ellie Dawes, Interim CEO at the Aplastic Anaemia Trust explains:

Super Rare is about being there for people. It’s about people who live with a rare condition, and know what it’s like, making the way a little easier for the people who will be diagnosed this year.  

Times are tough out there, and people with aplastic anaemia need our support more than ever. Your fundraising this year could provide someone with access to an expert psychologist, to help them deal with the impact of being Super Rare.  

By donating at a Together Walk, you could ensure The Aplastic Anaemia Trust can pick up the phone to someone with aplastic anaemia who is struggling financially and can’t work out how to navigate the benefits system.  

For the past two years, people living with aplastic anaemia and their friends and family have joined in with Super Rare and helped us to expand our services and support for people with aplastic anaemia.  

It’s because of you we’re planning brand new research projects this year that will enable a deeper understanding of the condition and enable clinicians to tailor and improve treatment. 

The Aplastic Anaemia Trust created the Super Rare campaign during the pandemic, to bring people together. That’s why we’re so happy this year to be joining with our friends at other small charities to help their communities to support their work in the same way.  

I’ll be organising a walk in my local wetlands here in Walthamstow in East London – and I would love to see some of you there! Whether you’re living with aplastic anaemia, or fundraising for one of the other rare conditions joining the campaign this year, it’s a wonderful opportunity to meet each other and share our experiences.