Pfizer : Teams With African American Choir to Bring Awareness to Sickle Cell, Rare Diseases

Being told you have a so-called "rare disease" can be a scary thing. But despite the small size of individual patient populations, rare diseases are collectively common and their burden on society is staggering. Diseases such as growth hormone disorder, hemophilia, and sickle cell are among 10,000 known rare diseases that affect an estimated 400 million patients worldwide1, equal to the entire population of the USA - the world's third largest country.

You are not alone. Rare Disease Day is observed every year on the last day of February to advocate for all those living with a rare disease to be seen and heard. This year, Pfizer is helping shed light on the experience of living with sickle cell disease with the help of B Positive Choir.

B Positive Choir is a group of 60 people from across the United Kingdom, all of whom either live with or know someone with sickle cell. The choir first shot to fame on Britain's Got Talent in 2018 with their performance of "Rise Up". Their mission is to raise awareness of the importance of black blood donation, the prevalence of sickle cell, and the health inequalities that impact the sickle cell community. Through music, the choir aspires to move people to find out more about sickle cell disease, and its impact on patients' lives.

Eighty percent of rare diseases have genetic origins,¹ including sickle cell disease, an inherited blood disorder that affects approximately 100,000 people in the USA, primarily African Americans, and nearly 8 million people globally.^2,3

Last year, Pfizer partnered with Next Step and Kendall Square Orchestra to champion an original song called "Come and Walk a Mile". The song, written by Next Step's young members, tells the story of what it's like to live with a rare disease. This year, we are delighted to be working with the B Positive Choir to record an updated version of "Come and Walk a Mile" in honor of the sickle cell community.

Bill Kubicek, Founder and Executive Director of Next Step says:

"Last year, it was inspiring the way the production and recording of their own original song 'Come and Walk a Mile' made our young people feel seen, heard, and valued. Our goal for the song is to amplify the shared experiences of people living with a rare disease through the power of music, for them to know they are not alone. Many of our young people live with sickle cell disease, so it is very fitting that 'My Mile' will live on to champion the voice of our sickle cell warriors through the B Positive Choir."

Conrad Gayle, Choir Director for the B Positive Choir, believes music and songs like "Come and Walk a Mile" can help people struggling to find their voice.

"When I first heard 'Come and Walk a Mile' I was moved by the diversity of voices coming together to show how they are united as a community by both their struggles, and triumphs, living with a rare disease. I'm honoured that we will now get to share our 'mile' through this song, and we hope it helps more people understand what life is like for the sickle cell community."

"Music is something that brings so many people together," says Gayle. "When we are going through something difficult or challenging, music can help us heal, persevere, and feel connected to others. I know I am not the only one who has a couple of special songs that I turn on when I need to feel uplifted. That's why the choir and I wanted to share a playlist of songs that restores us and gives us joy when we need it most."

You can find the B Positive Choir's playlist of healing songs here.

Pfizer aspires to be the world's leading innovator in rare disease by pioneering science that has a profound impact on the lives of underserved patient populations. We are grateful to the B Positive Choir for adding their inspiring artistry to this mission, and we look forward to sharing their version of "Come and Walk a Mile" later this year.

Read more about Come and Walk a Mile.

Read more about overcoming the stigma of sickle cell disease.

Sources

1. RARE Disease Facts - Global Genes.
2. Centers for Disease Control and Prevention. "Data & Statistics on Sickle Cell Disease." https://www.cdc.gov/ncbddd/sicklecell/data.html. Accessed February 6, 2024.
3. The Lancet: Haematology. "Global, regional, and national prevalence and mortality burden of sickle cell disease, 2000-2021." https://www.healthdata.org/research-analysis/library/global-regional-and-national-prevalence-and-mortality-burden-sickle-cell#:~:text=The%20number%20of%20people%20living,9%C2%B72)%20in%202021. Accessed February 6, 2024