St. Vincent’s University Hospital marks Rare Disease Day with funding announcement for Rare Disease Research Coordinator

29th February 2024

As the world commemorates Rare Disease Day, St. Vincent’s University Hospital (SVUH) stands at the forefront of rare disease care and research, proudly announcing the successful funding for a Rare Disease Research Coordinator under the Rare Disease Research Catalyst consortium grant from the Health Research Board (HRB). This significant achievement not only reaffirms SVUH’s unwavering commitment to rare disease care but also highlights the critical importance of this day in raising awareness and support for those affected by rare diseases.

The Rare Disease Clinical Trial Network (CTN) Conference, a visionary initiative pioneered by Professor Rachel Crowley, Consultant Endocrinologist at St. Vincent’s University Hospital and Clinical Professor at University College Dublin (UCD), alongside Professor Cormac McCarthy, Consultant Respiratory Physician at SVUH and Associate Professor of Medicine at UCD, is currently underway in Dublin. This critical assembly serves as a nexus for global experts, researchers, and advocates to delve into the forefront of rare disease clinical research, fostering collaboration and innovation.

Speaking at today’s conference, Prof Rachel Crowley said, “St. Vincent’s University Hospital is celebrating Rare Disease Day 2024 by highlighting its unparalleled contribution to rare disease care in Ireland. As the lead clinical site for the European Reference Networks (ERNs) for rare lung, rare bone, and rare neuroendocrine cancers, SVUH provides invaluable support to patients across Ireland. We are delighted to be in a position to commence recruitment for this important position, which we hope to have a suitable candidate in place for Q2 2024. We are hugely grateful to the HRB and UCD for all their support.”

SVUH has been at the forefront of rare disease advocacy and research, with Professor Crowley spearheading efforts in bone-related conditions, Professor Cormac McCarthy leading initiatives in lung-related disorders, and Dr. Hussein Almeamar, Consultant Neuroendocrine Tumors Physician, championing advancements in neuroendocrine diseases in Ireland. These rare disease clinicians serve as conduits for EU expertise to reach Irish patients and their families, ensuring access to cutting-edge treatments and holistic care. Additionally, SVUH staff actively participate in the UCD rare disease clinical trial network, striving to bring more clinical trials to Ireland and improve access to innovative treatments for rare diseases.

The Rare Disease Research Catalyst Consortium award, a substantial €3 million grant awarded by the HRB to Professor Rachel Crowley, as lead, in collaboration with UCD, will enable the appointment of a dedicated Rare Disease Research Coordinator at SVUH’s Clinical Research Centre site with UCD. This visionary role will navigate ethical considerations, data protection impacts, and research obstacles, serving as a catalyst to bolster research activity and foster the influx of clinical trials and interventions in Ireland. The role is mirrored at four other clinical sites under the HRB grant.

Furthermore, SVUH and UCD actively engaged in national efforts to improve rare disease services in Ireland. Professor Cecily Kelleher, chairing the National Rare Disease Steering Group established by Minister for Health Stephen Donnelly, on which SVUH is prominently represented, leads the charge in developing a new Rare Disease Plan for Ireland. This transformative plan aims to elevate services and support for individuals and families grappling with rare diseases, setting forth ambitious yet achievable goals to effect meaningful change.

A rare disease is defined in Europe as a disease with a prevalence of fewer than 5 cases for every 10,000 persons, collectively affecting around 6% of the population in Ireland. SVUH’s commitment to rare disease care and research underscores its dedication to improving the lives of the estimated 300,000 individuals living with rare diseases in Ireland.

For further information or to arrange an interview with Professor Rachel Crowley, Consultant Endocrinologist at St. Vincent’s University Hospital and Clinical Professor at University College Dublin (UCD), please contact:

Jennie Cotter | Corporate Communications Manager at SVUH | 087 906 2781 | jcotter@svhg.ie