Avril Daly Vice-President of EURORDIS, former Chairperson of Rare Diseases Ireland, and CEO of Retina International and Mike O’Donnell, VP of Operations, BioMarin International Limited and Site Lead at Shanbally at the announcement of a commission for a sculpture at BioMarin’s site in Cork, to signify the company’s commitment to supporting rare disease patients. (Adrian O’Herlihy)
BioMarin Pharmaceutical Inc. will commission a new sculpture for its site in Shanbally, Cork, to signify the company’s commitment to supporting rare disease patients. The theme for the commission, which is being held in association with the National Sculpture Factory, is a Tree of Life – this follows in the footsteps of an installation at BioMarin’s US headquarters. In the run up to Rare Disease Day 2020, submissions for the new sculpture from a number of artists across Ireland were reviewed by a panel of judges, including leading patient advocate, Avril Daly, Vice-President of EURORDIS, former Chairperson of Rare Diseases Ireland, and CEO of Retina International.
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. The facility at Shanbally is BioMarin’s only manufacturing base outside the US, and work on a €38 million expansion at the site is currently in progress.
An estimated 280,000 people in Ireland have a rare disease.1 Most rare conditions have a genetic component, and they are often complex, chronic, and disabling.2 Half of rare diseases affect children, 30% of whom will die before the age of five years.2 Despite this, only 5% of rare conditions have an approved therapy.2
BioMarin’s mission of developing new treatments that will make a big impact on small patient populations is a shared purpose that has a deep effect on the workforce. The team in Shanbally is commissioning the sculpture to capture the strong empathy which BioMarin’s employees in Ireland feel for rare disease patients and their families, and the company’s ambition to develop therapies that will help patients in the management of these challenging conditions.
Mike O’Donnell, VP of Operations, BioMarin International Limited and Site Lead at Shanbally, speaking about the significance of Rare Disease Day said:
“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 with these conditions. For 95% of rare diseases, there is currently no approved treatment,2 which is a difficult situation for patients and their families to face. BioMarin is one of the few biopharmaceutical companies dedicated to this challenging field of medicine. For more than two decades, we have been pioneering breakthrough treatments for patients suffering from rare genetic diseases. Here in Cork we have an exceptional pool of life sciences talent and expertise. The Tree of Life initiative will represent our partnership with the rare disease community and be a daily reminder of our commitment to do everything we can to make a big impact on small patient populations.”
Speaking about improving the future for rare disease patients, Avril Daly, Vice-President of EURORDIS, former Chairperson of Rare Diseases Ireland, and CEO of Retina International, said:
“Since its inception in 2008 Rare Disease Day has grown from 12 participating countries to over 90. I am delighted to be part of the Tree of Life initiative that will serve to build awareness of rare disease populations in Ireland and the challenges they face.
The key to developing awareness, understanding and significantly effective therapies for those living with rare disease is collaboration. BioMarin live this approach and engage with patient groups, as well as medical professionals. BioMarin is one of a small number of specialist rare disease companies located in Ireland working to change the future for patients with these diseases”
Collaborating with the National Sculpture Factory, BioMarin invited a number of artists across Ireland to develop a concept for the sculpture based on the theme of a Tree of Life. The judging panel, which also includes an artist, curator and an IDA representative, will select the winning design to award the commission. BioMarin will announce the successful artist this summer, with the unveiling of the sculpture in autumn 2020.
