You are here: Rare Disease Day 2019 | Action Medical Research

Parents. Children. Families. Researchers. Communities.

We're all joining forces on Rare Disease Day, 28 February, to help raise awareness of rare diseases and the need for further investment in medical research.

Help us spread the word about Rare Disease Day. Follow us on TwitterFacebook and Instagram  and get involved using the hashtags below!

#RareDiseaseDay #HopeForRare #ShowYourRare

Funding vital research into rare diseases

Living with juvenile Batten disease

Twins Toby and Corey, and their little sister Izzy all have the rare and devastating condition juvenile Batten disease. Children with this disease experience devastating symptoms including blindness, tremors, epilepsy, problems with balance and walking, behavioural and psychological issues. Tragically, the disease is fatal.

Research can help children but we need your support to make it happen.

We know it will take time, and there won't be a cure in our children's lifetime, but we just hope that one day other families won't have to go through what we've been through.

Toby, Corey and Izzy parents, Dee and Jody, have kindly shared their experiences to create this moving film that shows the devastating impact juvenile Batten disease has had on their family.

Read more stories from families fighting rare diseases

More about Action Medical Research

For over 65 years we’ve been saving and changing children's lives through medical research and have spent over £120m funding some amazing medical breakthroughs.

Today we fund a broad range of cutting-edge medical research across the UK to tackle premature birth, support children living with disabilities and develop treatments for rare and incurable diseases.