GUILDFORD, England, February 26, 2018 /PRNewswire/ --
- A cross-party group of high-profile MPs and Peers will today be joined by patients, charities and industry to form a one-off choir group to shine a light on the challenges faced by people who have a rare disease
- The event aims to engage public and policymakers to ensure people with a rare disease get the same opportunities for diagnosis and treatment as those with more common conditions
- 3.5 million of us will be impacted by a rare disease within our lifetimes - nearly 1 in 17 people in the UK1 - but patients struggle to access treatments
- The choir will take place just before Prime Minister's Questions - 11.00-12.00, Wednesday 28 February 2018, Westminster Underground Station, London
Sanofi and its specialty care global business unit, Sanofi Genzyme, today announced that a cross-party group of MPs and Peers are joining forces with patients and charity groups to sing as part of a one-off choir event taking place at Westminster Underground Station on Rare Disease Day (28 February 2018) to encourage awareness and action to support the millions of people who will be impacted by a rare disease.
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The 'One Voice Choir' will perform to members of the public as part of events taking place to mark Rare Disease Day 2018.
Parliamentary health leaders including Sharon Hodgson MP, Shadow Public Health Minister, Lisa Cameron MP, SNP Mental Health Spokesperson and Baroness Judith Jolly, Lib Dem Health Spokesperson will take part in the event and believe that it is only by coming together with One Voice that political leaders and patients can create the right environment to improve outcomes for people affected by a rare disease.
"I am very excited to be part of the One Voice Choir and support Rare Disease Day," says Dr Lisa Cameron, MP for East Kilbride, Strathaven and Lesmahagow. "Rare Disease Day is a day where we can unite together to help ensure patients and families affected by these conditions have access to appropriate care and support."
The event has been organised by Sanofi, underlining its commitment to supporting patients who have a rare disease and their families. The choir will be led by Joe Prescott, a talented musician and choral conductor who plays with the London Musical Theatre Orchestra.
A rare disease affects 1 person in 2000 or fewer.1 However, collectively rare diseases are not 'rare', as 3.5 million of us will be impacted by a rare disease within our lifetimes. That is nearly 1 in 17 people in the UK.1 With that said, fewer than 1 in 50,000 people are born with an ultra-orphan disease, also referred to as 'ultra-rare or 'very rare'.2 Due to their small prevalence, many of those affected by rare and ultra-orphan diseases face challenges in receiving a diagnosis or accessing treatment, which can have a life-changing impact on a patient and those they care about.
Inspired through the power of song
The choir will be singing songs that hope to inspire listeners to overcome challenges they may face, as the rare disease community has to do every day. Such songs will include: "Bridge Over Troubled Water" by Simon & Garfunkel, "Don't Stop Believin'" by Journey and "Climb Every Mountain" from The Sound of Music.
"Raising awareness is a fundamental part of what we do at Rare Disease UK and we have a busy schedule of activities planned around Rare Disease Day. I'm delighted to be a part of the One Voice Choir as one of those activities," says Dr Jayne Spink, Genetic Alliance UK CEO, Chair of Rare Disease UK. "Many people may be hearing about rare diseases for the first time today, so we hope that as well as enjoying the choir performance, people will also be prompted to find out more about rare diseases and how they affect patients and their families."
Patients should be at the centre of discussion
It is the patients and their loved ones who rely on collaborations between the government, industry and research community to support advancing life-changing treatments.
"When being diagnosed with a rare or ultra-orphan disease, patients and their families often feel alone," says Daniel Lewi, Chief Executive at Cure & Action for Tay-Sachs (CATS) Foundation. "It is important we support those families to provide the best possible life for their loved ones, and make them aware they are not alone in their struggles, but have a community behind them."
Today, Sanofi continues to champion the patient's voice for better access to much needed treatment and industry innovation that have the potential to improve outcomes and lives. People who are affected by rare and ultra-orphan diseases share a common struggle for equal access to treatment; anyone should be able to access appropriate treatments, irrespective of how common a disease is.
"We continue our support for the rare and ultra-orphan community," says John Ivory, Franchise Head, Rare Diseases UK & Ireland MCO and Country Head Sanofi Genzyme, Ireland. "Through inspirational and motivational activities, such as the One Voice Choir, we can help empower patients in their everyday lives and raise awareness around these often debilitating diseases."
One Voice Choir members
Lord Aberdare Bernard Jenkin MP Ailsa Arthur, Trustee, AGSD UK Baroness Jolly Jon Ashworth MP Rachael Mann, Policy and Public Affairs Manager, BIA UK Kevin Brennan MP Bettina Mavrommatis, Senior Rare Disease Officer, Department of Health & Social Care Baroness Brinton Bob Neill MP Dr Lisa Cameron MP Baroness Neville-Jones Julie Cooper MP Jenny Ousbey, Director and Head of Health, WA Communications Jim Cunningham MP Monika Preuss, Head of Genomics Science & Emerging Technologies, Department for Health & Social Care Alexandra Fraser, patient Marie Pritchard, patient representative, representative, AGSD UK SWAN UK Mary Glindon MP Andy Slaughter MP Sue Hayman MP Katie Spencer, Rare Disease Officer, Department of Health & Social Care Sharon Hodgson MP Dr Jayne Spink, Chair, Rare Disease UK George Howarth MP Peter Wasson, Account Director, WA Communications Mohammad Zafar, patient representative, SWAN UK
About Rare Disease Day
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
For more information, please visit: http://www.rarediseaseday.org .
Sanofi is dedicated to supporting people through their health challenges. We are a global biopharmaceutical company focused on human health. We prevent illness with vaccines, provide innovative treatments to fight pain and ease suffering. We stand by the few who suffer from rare diseases and the millions with long-term chronic conditions.
With more than 100,000 people in 100 countries, Sanofi is transforming scientific innovation into healthcare solutions around the globe.
Sanofi, Empowering Life
Sanofi Genzyme focuses on developing specialty treatments for debilitating diseases that are often difficult to diagnose and treat, providing hope to patients and their families.
For more information please visit http://www.sanofi.co.uk.
- National Congenital Anomaly and Rare Disease Registration Service. Available at: https://www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-ncardrs/ Accessed February 2018.
- Clinical Recommendations Committee. Available at: https://www.gov.im/media/631127/orphanorultraorphandruginterven.pdf Accessed February 2018.
SOURCE Sanofi Genzyme UK