How we are making a difference to families living with rare conditions

Tuesday 16 March 2021

Tags: rare conditions

A small charity that supports families living with a rare bone marrow failure disorder has been awarded a grant by Contact to help them continue supporting families turning to them more than ever during the pandemic.

Diamond Black Fan Anaemia (DBA) UK supports over 100 families in the UK with this rare genetic condition. People with DBA fail to produce red blood cells properly and may need treatments like regular blood transfusions, steroid treatment and in some cases bone marrow transplant.

As a result all of the children DBA UK currently supports are shielding.

Leisa Batkin from DBA UK says: “As a small charity it can be difficult to find funding so we were so thrilled that we applied and were awarded a grant from Contact. We’ll use it to fund a further year of support and drive our charity forward by supporting our families with regular webinars, clinical signposting and effective communication. It will also help us focus on our most deprived families who are digitally excluded.

“Some of our children have been shielding since last March and now with school being closed it was a real concern to us that they would fall further behind in their education. The grant means  we can  support some families to improve their  home schooling experience by providing ipads for example .  We’ve already been able to help our children who have to go for regular transfusions by providing them with games to keep them entertained. We are so thankful to Contact  for this opportunity to make our families lives a little better.”

The grants like the one awarded to DBA UK have been made possible thanks to a match funding partnership between Pears Foundation and the Department for Digital, Culture, Media & Sport (DCMS) and forms part of the Government’s £750m emergency Covid-19 funding charities package. As one of Pears Foundation’s trusted, long term partners, Contact was chosen to award and distribute each grant – worth between £5-15k – to individual support groups to ensure funding gets to frontline organisations and their communities.

Find out more about our rare conditions work

Find out more about Contact’s information about rare conditions

Our A-Z of Medical Conditions has information on hundreds on conditions, including information on symptoms and possible treatments. It also includes details for support groups, which can be an invaluable source of condition-specific information and support.