Shedding a light on rare diseases

A biopharmaceutical company in Shanbally illuminated its site for Rare Disease Day which took place this week.

BioMarin Pharmaceutical Inc was part of an initiative which saw buildings and landmarks across the globe lit up.

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 one in 2,000 people.

There are more than 6,000 rare diseases affecting up to six per cent of the total EU population, and it is estimated that up to 300,000 people in Ireland have a rare disease.

However, only five per cent of rare conditions have an approved therapy.

BioMarin provides breakthrough treatments to people around the world living with rare genetic diseases. Ireland is home to BioMarin’s headquarters for operations in Europe, the Middle East and Africa and the facility at Shanbally is BioMarin’s only manufacturing base outside the US.

Work has continued on the establishment of a drug product filling facility at Shanbally and 2022 will see the new facility become fully operational following a significant €38 million investment in the plant.

Michael O’Donnell, Vice President of Operations, BioMarin and Site Leader at Shanbally 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,” Mr O’Donnell added.

Vicky McGrath, CEO of Rare Diseases Ireland, added that “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.”