March 3, 2020

Bigger than Life, giving ‘RARE’ a voice!

In light of Rare Diseases Day 2020, EU40 has co-organised Phil L. Herold’s exhibition inside the European Parliament, an exhibition of artwork and life.

The opening reception of the exhibition took place on February 18th at the European Parliament.

The event saw the participation of MEP  Stelios KympouropoulosMEP Tomislav Sokol, and MEP Loucas Fourlas  and the presence of Commissioner for Health and Food Safety, Stella Kyriakides.
With the art contribution of 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. 

At 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.

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In the press: 

The Parliament Magazine