Rare Disease Day 2016 – Ataxia

Rare Disease Day 2016

Rare Disease Day 2016

In the UK, a rare disease is classified as any condition that affects fewer than 1 in every 2,000 people. This means that a staggering 1 in 17 people will have a rare disease at some stage in their life. Across the globe it is believed that there are around 350 million affected by a rare disease as this infographic from Pfizer illustrates.

As part of International Rare Disease Day, Ataxia UK were kindly asked to exhibit their work at the UK head office of Pfizer Pharmaceuticals. It was a great chance to chat with industry professionals and educate them on the complexities of the ataxia condition. I was kindly accompanied on the day by former Ataxia UK trustee and chair of Ataxia UK South-Downs Branch, James Downie. James was able to share his own personal experience of life with FA with the staff in attendance (thanks for your help James!). 

Across town, our research team attended a conference hosted by Findacure on the subject of drug repurposing for rare diseases. Drug repurposing essentially looks at drugs that are already in development, or on the market, and uses them as a starting point as a means of treatment for other conditions that they were not initially intended for. 

Ataxia UK’s Research Officer, Dr Julie Vallortigara, presented at the conference with a talk on patient group led repurposing research – you can listen to the talk here. In the context of raising awareness about ataxia and Ataxia UK’s mission, Dr Vallortigara gave an interview to the online resource Diseasespotlight – you can read the interview here. 

Dr Vallortigara alongside Dr Michele Lufino of Oxford University – who is doing research on ataxia.

It’s always hugely valuable to spread the word of ataxia and to do so in such esteemed company was a real privilege, particularly on such a suitable day! – Rare Disease Day. 


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