EU40 is a delight to support the Phil L. Herold’s exhibition for the opening reception of the Rare Diseases Day 2020 initiative, that will take place on February 18th at the European Parliament.
This event will be hosted by MEP Stelios Kympouropoulos, MEP Tomislav Sokol, and MEP Loucas Fourlas. We will count on the presence and welcome words of Commissioner for Health and Food Safety, Stella Kyriakides to open this inclusive initiative and have the chance to witness a performance by soprano Noémie Desquiotz Sunnen, living with ALS.
Rare diseases are chronic, highly complex, progressive and severely disabling, frequently affecting life expectancy and generating specific care needs. Due to their low prevalence, little is known about most rare diseases. As a result, they are poorly diagnosed and their symptoms under-recognized in healthcare and social systems.
The EU enables the rare disease community to create the critical mass of patients, experts, knowledge, guidelines and resources needed by coordinating and adding value to national efforts. Rare diseases are an area of high unmet need, where a coordinated EU action is vital improving early diagnosis and the quality of lives of people affected by rare diseases.
Otherwise, according to the European Journal of Human Genetics, there are more than three hundred million people living with a rare disease in the world.
In EU40 we understand that this reality has to be more visible and normalized and therefore we understand that initiatives like this one are fundamental to help bring awareness to the whole society.
The Rare Diseases Day 2020 initiative is comprised of a series of events that will bring together a multi-stakeholder collaboration, including patient organisations, medical professionals, academia and industry, MEPs and European Commission. Aiming to discuss the reality of living with Rare Diseases, the importance of early diagnosis and highlight achievements, opportunities and challenges that have emerged in the field of rare diseases.