Global biopharmaceutical company, BioMarin illuminated its site in Shanbally, Cork for Rare Disease Day on Sunday.
As part of Rare Disease Day, buildings were lit up to shine a light on the isolation often experienced by those living with rare disease, which has been particularly heightened by the global pandemic.
It is estimated that 280,000 people in Ireland have a rare disease.
According to a recent survey by Eurordis Rare Disease Europe of 7,000 rare disease patients, eight in ten (84%) experienced disruption to their care as a consequence of the pandemic.
The survey also found six in ten patients have been unable to access diagnostic tests, receive therapies such as chemotherapies or infusions, or have seen their surgery postponed or cancelled.
Rare diseases are often highly debilitating and life-threatening, and delays to diagnostic tests or treatment can result in a severe deterioration of symptoms.
Three in ten respondents said these resultant delays have been life-threatening, while two-thirds claimed that their mental health has suffered, leaving them feeling isolated and depressed.
BioMarin is a global biopharmaceutical company focused on developing first-in-class and best-in-class therapeutics that provide meaningful advances to patients who live with serious and life-threatening rare genetic diseases.
This year, BioMarin is supporting and sponsoring a film that highlights the people behind rare diseases.
My Rare Life gives a voice to those people with rare diseases across Europe, including Ireland.
It aims to highlight their needs and perspectives in a way that has never been done before and allows their stories to be told in their words.
Michael O’Donnell, VP of Operations, BioMarin International Limited and Site Leader in Cork said that collaboration is key to raising awareness of rare diseases and their impact.
“Rare Disease Day brings together all of the players in this field, all working to improve the lives of those with rare disease,” he said.
“We are proud to have exceptional life sciences expertise at BioMarin, and an incredibly dedicated workforce.”
The My Rare Life film is available here.