European Organisation for Rare Diseases Presents Award to Dr Birutė Tumienė

EURORDIS-Rare Diseases Europe, which unites 956 rare disease organizations from 73 countries, that are working together to improve the lives of the 30 million people living with a rare disease, has been awarding the Black Pearl Award for almost a decade. For the achievements in the creation and development of the European Reference Networks, this year the Black Pearl Statue was awarded to Dr Birutė Tumienė, a researcher from the Department of Human and Medical Genetics of the Vilnius University Faculty of Medicine.

“It is important for a specialist like me to be able to learn throughout life and to cooperate and actively communicate with colleagues and patients. This award is very valuable because it marks a lot of work and many years of effort. Since it comes from patients, that makes it extra special. Almost all the problems we’re solving are global, and we’re all working together for a common purpose. It’s gratifying that Lithuania and our work are appreciated for their contribution in this field,” Dr Tumienė said.

The establishment of the European Reference Networks brings together more than 1,200 specialised centres across Europe and carries out highly specialised clinical practice, research and training activities in the field of rare diseases. Dr Tumienė has been working in this field for the past 15 years. Her work includes clinical practice, coordination and implementation of research programmes and projects, teaching, and a wide range of expert and public activities in various European and international rare disease organisations.

The Eurordis Black Pearl Awards have been presented by patient organisations, politicians, researchers, media organisations, and others since 2012 to recognise important achievements in the fight against rare diseases. The Black Pearl Awards always take place in February, marking the start of a month-long marathon of events for rare diseases that spans more than 90 countries around the world.