Rare disease community call for their unified voice to be heard in the fight for equitable care
pharmafile | February 28, 2023 | News story | Business Services |
Reading, 28th February 2023. To mark today’s Rare Disease Day, Sanofi has released This is Rare, a campaign which puts the voices of the rare disease community centre stage in the call for greater recognition, awareness and advocacy for the 1 in 17 people affected by a rare disease in the UK.[1] Taking inspiration from the empowerment song ‘This is Me’, originally sung by Keala Settle, patients, patient organisation representatives and health professionals came together at Abbey Road Studios to share their experiences through music and song under the guidance of world-famous vocal coaches and presenters, Carrie and David Grant MBEs.
Carrie & David Grant MBE
“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.”
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 greatest 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
Patient organisations and communities provide invaluable support to those who use their services or participate in their networks. Through connecting with others also affected by a rare disease, feelings of isolation can be reduced, individuals can feel empowered, and families can feel better supported.1 This is Rare has brought members of the community together to provide a space where they can convey what rare disease means to them and elevate their voices through connection and the power of music.
The following quotes are from a selection of members of the community who gave their time and their voices to share their experiences as part of this project:
Louise Owusu-Kwarteng
Louise has a rare disease called Thrombotic thrombocytopenic purpura, otherwise known as TTP. It’s an ultra-rare, complex, and life-threatening blood clotting disorder.
“Singing this song alongside people who, like me, have experienced the struggle of having a rare disease was incredible. We are brave, we are bruised, from years of unanswered questions and delays in diagnosis, but we fight on through this song and refuse to be broken ‘down to dust’. We are ‘warriors’ resonates so much to me, because my both of my names (‘Louise Owusu’ ) mean warrior. The lyrics are so powerful, and I hope it helps raise the profile of rare diseases to give people a bit more understanding of some of the challenges we face.”
Michelle Wood, Paediatric Physiotherapist
“Three-quarters of all rare diseases affect children and cause a third of infant mortality in the UK. [2] 6,000 children have a disease so rare it doesn’t even have a name, and half of them never manage to get a diagnosis”1 said Michelle Wood. “Rare disease patients often describe feeling isolated and unsupported.[3] 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.”
Ben Whitehouse, Head of Rare Diseases, Sanofi UK and Ireland
“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, to deliver our vision for Better Care for Rare.”
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