Rare Disease Day 2023 – raising awareness around the world

Each year, to mark Rare Disease Day, pharma companies and agencies collaborate with patients and charities to create campaigns that raise awareness about the impact of rare diseases around the world.

This year, to mark Rare Disease Day on 28 February, Sanofi has launched a campaign to amplify the voices of the rare disease community.

For the company’s ‘This is Rare’ campaign, patients, charities and health professionals came together at Abbey Road Studios in London to record a cover of a song from The Greatest Showman, ‘This is Me’, under the guidance of vocal coaches and presenters, Carrie and David Grant.

“Raising awareness for people living with a rare disease remains a very important task,” the pair said. “We are delighted to be shining a spotlight on the experiences of those involved, who are standing up proudly and saying this is rare, this is me.”

One in 17 people will be affected by a rare disease at some point in their lives, amounting to around 3.5 million people in the UK.

However, the lack of scientific knowledge and quality information on rare diseases often results in a delay in diagnosis, and the broad diversity of disorders and relatively common symptoms mean that initial misdiagnosis is frequent.

‘This is Rare’ aims to raise awareness of the individuality of rare diseases, while also emphasising the collectively common impact, calling for greater recognition, timely diagnosis and appropriate and equitable access to care.

Ben Whitehouse, head of rare diseases at Sanofi UK and Ireland, said: “By focusing on these uncommon and underserved medical conditions, we want to empower the lives of patients with rare diseases by developing and introducing new treatments, as well as providing support that extends beyond our medicines, to deliver our vision for Better Care for Rare.”

Also raising awareness for this year’s Rare Disease Day, Havas Health & You has partnered with with H4B Boston and Beyond the Diagnosis to present #RareInTimesSquare.

The campaign aims to put a face to some of the rarest diseases in the world by enlisting dozens of artists to create portraits of children living with a rare disease.

Expanding on the project, Havas Health & You wrote: ‘This month, rare disease is represented with art on one of the world’s most watched screens… If you are trying to spot them, look up at the northeast corner of 1500 Broadway and West 43rd street.

‘Don't forget to grab a selfie, tag us, and use the hashtag #RareinTimesSquare to make each child's rare disease more visible.’