Rare Disease Day is an annual campaign held on the last day of February, put together by Rare Disease UK  to raise awareness of rare diseases.

Being part of this campaign for a second year running has opened the opportunity to raise more awareness of ataxia among healthcare professionals and the general public.

We reflected on the campaign last year and worked really hard on making a bigger and better impact this year on getting ataxia awareness out there. The response on Facebook was incredible, thanks to you – the ataxia community – for sharing posts throughout the day. Along with reaching over 26,500 people, take a look at the statistics below, which you played a part in!

From the get go of the campaign on Thursday morning, it was encouraging to have so many of you jump on board and share tweets. The first one reached almost 2,000 people, and the numbers remained quite high throughout the day. The stats below give an idea of how many people would have heard and read about ataxia that day. This in turn can create better links between researchers, increase collaboration, enhance relationships with similar organisations and this collectively can raise awareness of ataxia among researches and healthcare professionals. This will improve research in ataxia and work towards finding treatment and a cure.

A big thank you to those who shared your stories with us, it was really important to share your experience living with ataxia – a rare disease – to show the Government why the UK strategy for rare diseases must be refreshed before the end of 2020. Your stories portrayed the difficulty some of you have faced in receiving your diagnosis of ataxia, and reinforced why rare disease patients must receive high quality services, treatment and support regardless of where you live in the UK. As well as that, sharing your story is powerful largely, because it gives a huge impact on the way people view ataxia – especially people who have never heard of it before.

Our next campaign will launch on International Ataxia Awareness Day on 25 September 2019. If you would like to take part in the next campaign, or think you have a story that would work well, please do send it along. If you would like to speak to us about an idea for a campaign, get in touch via [email protected] or call the office on 020 7582 1444.