Global biotechnology company BioMarin Pharmaceutical is illuminating its sites at Shanbally, Co. Cork and Earlsfort Terrace, Dublin, as part of its Rare Disease Day campaign.
The idea is to create a chain of lights across the world to unite the global rare disease community. The initiative will see buildings and landmarks across the globe lit up and is being led by Rare Disease Ireland and EURORDIS – Rare Disease Europe, in collaboration with international rare disease groups.
Jim Lennertz, senior vice president EMEA Commercial Operations and one of BioMarin’s global leaders based in Dublin said: “While Rare Disease Day aims to put the spotlight onto those living with rare disease, our teams at BioMarin are focused all-year-round on the people they support and are motivated by a shared drive to make a real difference. We are so proud of what our teams have achieved, particularly throughout the pandemic, in ensuring that patients across the globe continue to be supported by therapies manufactured here in Ireland.
We are privileged to have a team with exceptional life sciences expertise at BioMarin, and a dedicated workforce which we are currently expanding through an active recruitment campaign.”
Rare Disease Day is marked annually on the last day of February, and aims to shine a light on the experience of those who live with rare conditions. A 'rare disease' is defined as a life-threatening or chronically debilitating disease that affects less than 1 in 2,000 people. There are more than 6,000 rare diseases affecting up to 6% of the total EU population. In Ireland it is estimated that up to 300,000 people have a rare disease. However, only 5% of rare conditions have an approved therapy.
Michael O’Donnell, vice president of Operations, BioMarin and Site Leader at Shanbally, Co. Cork, speaking about the team at the Irish facilities said: “Rare Disease Day allows us to highlight the partnerships and collaborative relationships that exist between BioMarin and the rare disease community. These relationships broaden our understanding of individuals and families living with, or affected by, a rare disease, and drive us to do everything we can to provide pioneering treatments that improve upon the current standard of care for debilitating and life-threatening conditions.”
Speaking about Rare Disease Day, Vicky McGrath, CEO of Rare Diseases Ireland, added: “With well over 6,000 documented rare diseases, many people living with rare conditions are left feeling confused, isolated and alone as they struggle to get information on their condition and link with people in a similar position. Rare Disease Day, the last day of February, is the international day designed to unite the rare disease community, estimated to number 300 million, around the globe.
The 'Light Up for Rare Diseases' campaign is a way for us to show our solidarity and support for people in Ireland living with rare conditions. We are delighted that BioMarin are demonstrating their continued commitment to the rare community in Ireland by joining the chain of lights across Ireland this Rare Disease Day.”