Willow blog

Willow receives funding from Alexion Charitable Foundation to deliver Special Days for young adults with rare diseases

October 26, 2022

Willow is delighted to announce that it has received a grant of £113,000 from the Alexion Charitable Foundation’s Rare Belonging programme to deliver Special Days to young adults living with rare diseases.

The one-year project will see Willow extend its work with this group, delivering 150 Special Days for 16-40 year olds in the UK, living with one of over 7,000 rare diseases.

Although these diseases are individually rare they are collectively common, with 1 in 17 people being affected by a rare disease at some point in their lifetime. They include life-long conditions such as muscular dystrophy, cystic fibrosis and many other rarer conditions, as well as as motor neurone disease and Huntington’s disease.

“We are thrilled to be launching this new project,” said Jonathan Aves, Chief Executive of Willow. “Many of the young adults in this group have complex needs and can’t get quality of life support from any other source. We’re proud that Willow can help them to create unforgettable memories with their loved ones and we’re incredibly grateful to the Alexion Charitable Foundation for making this possible.”

The new project builds on innovative work Willow developed through lockdown, when it worked with more young adults in this group. The charity found that in addition to the challenges of living with their condition, they were often faced isolation and had little support that focused on quality of life.

The project launches in September 2022 and will continue for one year.