2 March 2021
By Tom Collins
Global biopharmaceutical company BioMarin lights up for Rare Disease Day
BioMarin Pharmaceutical Inc. last week illuminated its sites in Shanbally, Cork and Earlsfort Terrace, Dublin to signify the Company’s commitment to supporting rare disease patients. Across the globe, buildings were lit up in support of Rare Disease Day to shine a light on the isolation often experienced by those living with rare disease, isolation that has been particularly heightened by the global pandemic.
An estimated 280,000 people in Ireland have a rare disease.1 Eurordis Rare Disease Europe conducted a recent survey2 of 7,000 rare disease patients, which highlighted that eight in ten (84%) experienced disruption to their care as a consequence of the pandemic. The survey 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 say these resultant delays have been life-threatening, and two thirds say 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. 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.
BioMarin’s mission of developing new treatments that will make a big impact on small patient populations has a deep effect on those working with BioMarin. The teams in Cork and Dublin, similar to people across the globe, have had to find new ways of working in the last twelve months to ensure their essential work continues. While Rare Disease Day aims to put the spotlight onto those living with rare disease, the teams at BioMarin are always focused on the people they support and are motivated by a shared drive.
Jim Lennertz, Senior Vice President EUMEA Commercial Operations and one of BioMarin’s global leaders based in Dublin commented:
“Those living with rare disease face daily challenges and the impact of the Covid-19 pandemic has exacerbated these challenges. As a company, BioMarin recognises this devastating impact on the rare disease community, and it has driven us to find innovative solutions to continue to support these people. An uninterrupted delivery of treatment is critical, and supporting home-infusions has been key to that over the last 12 months. However, there is so much more to be done; only 5% of rare conditions have an approved therapy.3
For BioMarin, Rare Disease Day is a time to highlight the crucial role that the biopharmaceutical industry plays in continuing to develop innovative medicines that will change the future for people living with these conditions. For more than two decades, we have been pioneering breakthrough treatments for patients suffering from rare genetic diseases.”
Michael O’Donnell, VP of Operations, BioMarin International Limited and Site Leader at Shanbally, Cork speaking about the significance of Rare Disease Day said:
“The key to raising awareness of rare diseases, and their impact is collaboration. Rare Disease Day brings together all of the players in this field, all working to improve the lives of those with rare disease. Rare Disease Day allows us to highlight the partnerships that exist between BioMarin and the rare disease community and our commitment to do everything we can to make a big impact on small patient populations. We are proud to have exceptional life sciences expertise at BioMarin, and an incredibly dedicated workforce.”
This year BioMarin is also 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) highlighting their needs and perspectives in a way that has never been done before. It allows their stories to be told in their words; the challenges they face, the changes they would like to see and how they would like to be seen by others. This film is available at https://www.facebook.com/MyRareLife2021