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Rohan's fight

Our little boy was just ten years old when he lost his fight. Without research, things will never change. It's so important to me that research into rare diseases like Rohan's is happening.

Vicky shares the heartbreaking story of her son, Rohan's, fight against a devastating mitochondrial disease.

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

A history of success

At Action we’ve been helping to save and change lives through medical research for over 65 years. We believe that with research the diseases that devastate the lives of so many children can be beaten.

"We hope that one day other families won't have to go through what we've been through."