Rare Disease Day: Rare is stronger with community

28 February marks Rare Disease Day: a patient-led awareness day celebrated globally. The day’s organisers share this year’s theme and why the strength of community is more important than ever.

One in 20 people will live with a rare disease at some point in their life, but despite this there is no cure for the majority of rare diseases and little awareness. These facts were the motivation behind Rare Disease Day (RDD).

The awareness day is marked every February by organisations and people living with rare diseases, aiming to improve knowledge of rare diseases amongst the general public while encouraging researchers and decision makers to address inequalities.

At its inception in 2008, which was a leap year, RDD was held on the rarest day of the year: 29 February. It is now held on the same or closest date each year.

“I think what is unique about RDD is it’s a patient-led awareness day,” reveals Lara Chappell from Eurordis, one of the organisations that created the day. “The messaging is from patients about patients and speaking to the over 300 million people living with a rare disease globally.”

Strength

This year, RDD is shining a light on the strength of community, Lara explains: “This year we turned RDD around and said rare is many, rare is proud, rare is strong.

“We’ve embraced the diversity of RDD: there are rare disease that are visible, some of those being a physical disability, but others are not visible, it could be blood disorders, for example.”

Lara’s son has a rare disease and she has learnt to advocate for him by being involved in this community, she explains: “You are working together and finding that people are going through the same thing, there’s so much strength that you can find in that.”

Change

Discussions around isolation have been inescapable over the last year, but this feeling wasn’t something new to the rare disease community.

“For people living with a rare disease, isolation can be a very common challenge,” stresses Lara. “It’s something that the community of people living with a rare disease have in solidarity.

“RDD is helping to break that isolation and show people by sharing common struggles, but also successes, we can work together as a community to advance.”

This RDD, feeling connected is more important than ever. This has driven the organisations behind the day to create more virtual, free resources.

“It’s so important to feel connected and to shine a light on people living with a rare disease and families at this time,” emphasises Lara. “We are utilising social media and we will be producing a video with our national partners in over 30 languages.

“By providing digital tools we will see this united visual identity everywhere on 28 February.”

There is constantly more to learn about the rare diseases affecting millions of people around the world. With RDD we are one step closer to greater treatments and opportunities for anyone living with a rare disease.

Learn more about rare diseases and how to show support on the day now.

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