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There’s just over one month until the biggest day in the rare disease calendar: international Rare Disease Day! As the excitement builds, we at Findacure have taken a moment to reflect on why we love this celebration of all things rare. And if you’re looking to mark the big day, don’t forget to sign up to our Drug Repurposing for Rare Diseases Conference, taking place on Wednesday 27th February

Libbie Read – Projects and Communications Manager

I love Rare Disease Day because it’s our chance to show the world how big and strong the rare community is.

Because they individually affect small patient populations, rare diseases are often overlooked and assumed to be unimportant. However, when you combine all rare diseases, it is estimated that they affect a massive 3.5 million people in the UK – that’s roughly 1 in 17. But this community isn’t just big – it is also resilient, motivated, ambitious, and ready for a fight. Rare Disease Day is our chance to showcase those who are doing their upmost to raise awareness, support patients and families, and drive research forward; it is our chance to show the world that rare does not equal unimportant. 

Mary Rose Roberts – Events Manager

Everyone comes together with one common goal: to get rare diseases on the agenda and transform the lives of rare disease patients.

My favourite thing about rare disease day is the overwhelming sense of community. No matter what field you’re in or what condition you represent, everybody comes together with the same purpose – to raise awareness for rare conditions: with the public, scientific community and decision makers, with the ultimate aim of transforming the lives of rare disease patients. It’s also a cause for celebration, showcasing the efforts of those in the rare disease community, the progress being made in rare science, and the journeys patients and patient groups have been on in their quests to find treatments and support others.

I’ve seen this multiple times at Rare Disease Day events over the past few years: at our own Drug Repurposing Conference – discussing the very latest developments in rare treatments, the BPSU Rare Disease Tea Party, and last year’s Rare Revolution Youth Magazine Launch, which displayed the many talents of young people affected by rare diseases. Rare Disease Day is a day I look forward to each year, (not only because it signifies the end of many months of hard work preparing for our conference!), but because it reminds me of just how supportive and close-knit the rare community is and reinforces my commitment to doing whatever I can to make a positive difference to patients and their families.

Rick Thompson – CEO

I love rare disease day because it puts rare diseases in the spotlight and celebrates rare lives.

The best thing about Rare Disease Day is really that it is a day when people affected by rare diseases are able to unite, and take control of the narrative. The average person’s interactions with rare diseases will generally come though medical documentaries, articles, or shows. These will invariably focus on specific conditions, their symptoms, their challenges, and their symptoms.

While this is all informative stuff, and raises crucial awareness for those conditions, Rare Disease Day is different. It focuses on rare diseases as a collective, and this helps to demedicalise the commentary. Instead the day focuses on the community of people and their shared experience of rare conditions. Even more crucially it highlights their achievements, their daily lives and the ways they live with a condition. It is a chance to give a positive message and image of the huge and vibrant rare diseases community. It tells the world that we are here, we are proud, we are powerful, and we want change for all rare disease patients – because we are people just like you, and deserve the same access to care and the same healthy life.

Why we love Rare Disease Day

by Libbie Read time to read: 3 min