European Union needs motion plan to offer higher diagnoses, treatment for rare diseases

At its conference in Bilbao, the European Economic and Social Committee (EESC) urged the European Union to launch a European motion plan stepping up cooperation between national health systems. The essential goal: to offer higher diagnoses, treatment and care to patients with rare diseases.

A European strategy to provide individuals with rare diseases the care they need within the EU Member State where one of the best treatment is offered.

This was the EESC’s plea to the European Union and its Member States on the conference held in Bilbao on 10-11 October 2023.

The Committee urges the EU to launch a European motion plan to step up European cooperation between health systems to fight rare diseases and provides patients access to essentially the most advanced knowledge and treatment wherever they’re within the European Union.

What rare diseases are

Rare diseases are conditions which are normally chronic and sometimes disabling or life-threatening. There are currently over 7 000 rare diseases affecting 8% of the EU population, roughly 36 million people.

Around 80% of them are genetic, of which 70% begin in childhood. As much as 95% of those diseases haven’t any specific treatment or cure. Examples include: amyotrophic lateral sclerosis (ALS), sickle cell and hemophilia.

The complexity of those diseases and the scarcity of information and knowledge make it difficult for patients, members of the family and healthcare professionals to receive a timely diagnosis, appropriate health and social care and any available treatment.

A European mission

The European Union has supported policy developments and research in the sphere of rare diseases extensively for greater than 25 years, but it surely needs a European technique to fight rare diseases as no Member State can succeed alone.

The 24 European Reference Networks (ERNs), established in 2017 with the support of the European Commission, are a vital milestone in European cooperation between healthcare systems and convey together a few of one of the best professionals and researchers within the EU across just about all areas of drugs and healthcare. This makes it easier to share experience in diagnosis, provide treatments and generate knowledge and research for European patients with rare diseases.

The EESC has been supporting a comprehensive EU approach that takes into consideration all of the needs of individuals living with rare diseases since 2009. In 2022, the Committee issued an opinion which reiterates this request and calls for EU solutions to mitigate the on a regular basis impact of rare diseases in each personal and skilled life.

The detailed conclusions of the conference will probably be published on the EESC website soon.

High-level speakers

Organized by the EESC’s Section for Transport, Energy, Infrastructure and the Information Society, the conference was the one health event promoted by the EU Spanish Presidency. It brought together 50 speakers, 45 EESC members, the European Commission’s Director General for Health and Food Safety, 3 Members of the European Parliament and around 550 participants from throughout Europe.

The very fact is that “rare diseases” will not be rare in any respect – they affect the lives of 36 million people across Europe. It’s a pan-European challenge that requires a pan-European solution. The EESC has recommend a set of recommendations to the EU institutions outlining ways to enhance the lives of individuals affected by rare diseases. We want a brand new strategy and a brand new European Solidarity Fund to support the financial burden faced by these patients. The time for motion is now.”

Oliver Röpke, EESC President

We want a European motion plan to strengthen European cooperation between health systems and permit patients with rare diseases to be treated in essentially the most suitable EU Member State. The European Economic and Social Committee has been calling for a comprehensive European approach. No single Member State could make it alone. Patients with rare diseases deserve one of the best care, regardless of where it is offered in Europe.”

Baiba Miltoviča, President, EESC’s Section for Transport, Energy, Infrastructure and the Information Society

A robust European Health Union is a Union that protects and cares for each citizen. On this case, it’s a Union that gives EU solutions to support patients living with a rare disease and their families. The EU has proposed measures spanning different policy areas and providing a comprehensive approach to rare diseases. Within the European Health Union we’re constructing, we have now an obligation to support people living with rare diseases and their families. Our efforts will proceed to make a difference to all those in need.”

Stella Kyriakides, European Commissioner for Health and Food Safety

Euskadi and its Department of Health are firmly committed to tackling rare diseases thoroughly, providing one of the best possible care and support to victims. Rare diseases are a priority and a key area of the Department of Health’s strategic framework. Euskadi’s Registry of Rare Diseases, launched in 2015, is an important tool to provide these patients much-needed visibility.”

Gotzone Sagardui, Minister for Health, Basque Government