Rare disease day 2019
Shout loud for rare disease

The quietest voices need to shout the loudest – the importance of Rare Disease Day

The final day of February marks Rare Disease Day. The ambition is to raise awareness of rare diseases on our “rarest day” – the last day of the shortest month.

On 28th February last year, there were over 3,000 mentions of “rare disease” online. That’s a serious number of people talking about a group of diseases defined as affecting fewer than one in every 2000 people.

Compare that to “cancer” however, and there are over 15,000 mentions. That’s five people talking about cancer for every one talking about rare diseases on the day dedicated to rare diseases.

It’s not a small day either. The who’s-who in healthcare mark the day and contribute to raising awareness of over 6,000 rare diseases. This includes the European Medicines Agency and the ABPI.

The numbers only tell half the story though. It may be a small group, but the quietest voices need to make the biggest noise and even the loudest voices may not be enough.

Bridging the gap through collaboration

The theme this year is ‘bridging health and social care’. Building bridges is only possible through partnership and collaboration. The strength of partnership matters most in rare disease where some patient groups can amount to one or two people round their kitchen table. They work ferociously for their members.

Indeed, some rare diseases may only affect a handful people and last year we were lucky enough to support families of children living with IOPD, an ultra-rare disease affecting only around 25 children. This first-hand experience taught us about the power of building these bridges between health and social care. Working with doctors, nurses, speech and language therapists, psychologists and importantly, schools and families, we co-created leaflets and worksheets that helped make school the inclusive experience that we all expect.

It’s changed the lives of people with IOPD, and it was only made possible because of collaboration between groups of people who really care about making a difference. And that’s what rare disease day is all about.

With the right awareness and support, collaboration in rare diseases can advance scientific research, it can put children into school and help them to make friends, and importantly, it can call on governments and health systems to develop policies that can transform the management of rare disease.

At Aurora, we know a thing or two about collaboration. We’re authoring a report on collaboration and will be sharing our recommendations on how we can all be better at collaboration later this year. You can download the latest instalment from this link or get in touch here.

Today though, look no further than reading all about the stories of people living with a rare disease by visiting the rare disease day website or get involved using EURORDIS’ hashtag, #showyourrare. Shout loud for rare diseases. We will be.

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