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.
#RareDiseaseDay #HopeForRare #ShowYourRare
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.
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.