People with a super rare disease like aplastic anaemia face unique problems. Help us raise funds and awareness this Rare Disease Day and be Super Rare!

How rare?

Aplastic anaemia is an "ultra-rare" disease. Its estimated that between 100 and 150 people will be diagnosed across the UK every year - that's around two people in every million. 

What does this mean? 

Funding for rare diseases is limited. Funding is more often allocated to diseases that affect larger numbers of people. People are more likely to fundraise or donate for a disease they have heard of - which means aplastic anaemia fundraisers are Super Rare too!

Low awareness of aplastic anaemia means it can be hard to diagnose – this can put lives at risk as people wait to receive the right treatment.

Aplastic anaemia patients are often treated on cancer wards and given leaflets about leukaemia or other cancers – because the treatment is similar. But when they tell friends and work colleagues about the disease, the seriousness is underestimated because people confuse the name of the disease with being "anaemic" An aplastic anaemia patient may never meet someone with the same disease as them. Patients feel isolated and alone as they face long, difficult treatment for a disease they have to explain again and again.  

By taking part in our Super Rare campaign for Rare Disease Day 2020, you will help raise awareness of aplastic anaemia, and funds which help The Aplastic Anaemia Trust to fund research and support these Super Rare patients. 

Take part

1. Tell Ten 
Tell ten people about aplastic anaemia with our Tell Ten social media kit. 

2. Super Rare Tea and Biscuits
Organise an online chat with friends, tell them a little about aplastic anaemia and see if they can guess the special ingredient in our Super Rare Biscuits!

3. Raring to go
Set yourself a simple challenge to complete in February 2021 and raise funds and awareness