Amplifying the voices of the rare disease community and placing them centre stage through projects like This is Rare
Sanofi recently hosted an exciting event at Abbey Road Studios to bring together the community to record a song which will be released to mark this year’s Rare Disease Day on 28th February. The choir comprised people living with a rare disease, patient organisation representatives and Sanofi employees, who all came together to re-record The Greatest Showman hit, This is Me.
The Sanofi Rare Disease team wanted to choose a song that spoke to the sentiment of being proud of who you are, not in spite of what makes you different, but rather because of it. The contemporary musical anthem’s lyrics, such as ‘I am who I'm meant to be, this is me’, perfectly expressed this vision.
1 in 17 people will be affected by a rare disease at some point in their lives. This amounts to 3.5 million people in the UK.1 This is Rare aims to raise awareness of the individuality of rare diseases but the collectively common impact. It seeks to highlight the need for greater recognition, timely diagnosis, and appropriate and equitable access to care. At present, people with a rare disease in the UK might see five different doctors and be misdiagnosed three times before they get the diagnosis they need.1
Thanks to the boundless energy and talent of BAFTA award-winning broadcasters and vocal coaches, Carrie and David Grant, the day was filled with both laughter and harmonies. They conducted online rehearsals in the lead up to the live performance where everyone was on mute so there was atmosphere of anticipation as everyone gathered in the famous Studio 2 of Abbey Road. Anticipation quickly turned to delight as the culmination of voices rung around the room.
We're thrilled to be part of this inspiring project which aims to unite the rare disease community through the power of music. Raising awareness for people living with a rare disease remains a very important task. 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.”
Dr Carrie Grant MBE & David Grant, MBE
This year’s choir builds upon another project where the Sanofi Rare Disease team brought together people living with Pompe disease to elevate their voices through the power of music. Following the success of the Pompe and Circumstance project, the mic was passed to This is Rare and the wider rare disease community. In doing so, they too could experience the overwhelming sense of community when brought together with those similarly striving to be heard.
“Rare disease patients often describe feeling isolated and unsupported.2 The longer it takes to make a diagnosis, the more worrying that can be for patients and their families, and the more advanced the condition will be before treatment can be started. This project is so important to raise awareness and educate so we can get more people diagnosed sooner.”
Michelle Wood, Paediatric Physiotherapist
At Sanofi, we're committed to creating fulfilling futures for extraordinary people, no matter how rare their condition. 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. These changes can make a real difference to helping to accelerate diagnosis and improve outcomes for patients with rare diseases. Now that’s something to sing about.
1. Rare Disease UK, Illuminating the Rare Reality, 2020, available at: https://www.raredisease.org.uk/wp-content/uploads/sites/7/2019/02/Illuminating-the-rare-reality-2019.pdf [Last accessed February 2023]
2. Crowe AL, McKnight AJ, McAneney H. Communication Needs for Individuals With Rare Diseases Within and Around the Healthcare System of Northern Ireland. Front Public Health. 2019 Aug 21;7:236. doi: 10.3389/fpubh.2019.00236. PMID: 31497589; PMCID: PMC6712370. Available at: https://pubmed.ncbi.nlm.nih.gov/31497589/.
Job bag number: MAT-XU-2300826 (v2.0)
Date of Preparation: June 2023