Sanofi Genzyme South Africa Supports 12th Annual Rare Disease Day

On the last day of February each year, Sanofi Genzyme joins hundreds of organisations globally to recognise International Rare Disease Day, with a view of raising awareness around rare diseases and its impact on patients' lives.

Sanofi Genzyme has been a proud supporter of Rare Disease Day since it was established by the European Organisation of Rare Disorders (EURORDIS) in 2008. The 2019 theme for International Rare Disease Day is “Bridging Health and Social Care,” which is focused on bridging the gaps in the coordination of medical, social and support services to tackle the challenges that people living with a rare disease and their families around the world face, every day.

Sanofi Head of Medical, Dr Alicia McMaster, concurs that Rare Disease Day provides an important opportunity to shed light on the impact that these frequently debilitating diseases have on patients and their families. “Given their rarity, these conditions are often difficult to diagnose and treat, and patients often endure a long odyssey involving many doctors, tests and numerous misdiagnoses.”

In 2017, Sanofi Genzyme launched a global initiative called Pledge4Rare, aimed at bringing together the global rare disease community to raise awareness of the more than 7,000 different rare diseases that collectively affect more than 350 million people around the world. The campaign encourages people to pledge to run or walk a mile or more in February in support of the rare disease community, and to share photos and videos on social media using the hashtag #Pledge4Rare.

The goal, this year, is to reach 7,000 miles, representing the more than 7,000 rare diseases.

Dr McMaster says in South Africa, where medical infrastructure and patient support is often a challenge, Sanofi Genzyme’s aim for Rare Disease Day 2019 is to advocate for timely and accurate diagnosis and early intervention, thereby enhancing patients' health and quality of life. “We will announce an exciting initiative in the coming weeks that highlights exactly how our company has put this year’s EUCORDIS Rare Disease theme into action.”

Country Head of Sanofi Genzyme, Dr Rashem Mothilal, says Sanofi Genzyme South Africa is committed to discovering and delivering transformative therapies for patients affected by rare diseases as well as providing support for individuals suffering from these debilitating and life-threatening diseases.

“We partner with South African patient organisations, healthcare professionals and local laboratories to facilitate the screening, diagnosis and management of patients with rare disorders. Our goal is ultimately to empower the lives of patients and families affected by a rare disease.

“Rare Disease Day 2019 is an important opportunity to create awareness and further the dialogue on the need for treatment, care and ongoing support for rare disease patients. Our soon-to-be-launched local initiative will demonstrate our commitment to prioritising the needs of patients.”