At its convention in Bilbao, the European Financial and Social Committee (EESC) urged the European Union to launch a European motion plan stepping up cooperation between nationwide well being techniques. The primary purpose: to supply higher diagnoses, therapy and care to sufferers with uncommon ailments.

A European technique to provide individuals with uncommon ailments the care they want within the EU Member State the place one of the best therapy is obtainable.

This was the EESC’s plea to the European Union and its Member States on the convention 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 well being techniques to battle uncommon ailments and provides sufferers entry to probably the most superior data and therapy wherever they’re within the European Union.

What uncommon ailments are

Uncommon ailments are situations which might be often continual and generally disabling or life-threatening. There are at present over 7 000 uncommon ailments affecting 8% of the EU inhabitants, roughly 36 million individuals.

Round 80% of them are genetic, of which 70% start in childhood. As much as 95% of those ailments haven’t any particular therapy or remedy. Examples embrace: amyotrophic lateral sclerosis (ALS), sickle cell and hemophilia.

The complexity of those ailments and the shortage of information and data make it tough for sufferers, members of the family and healthcare professionals to obtain a well timed analysis, acceptable well being and social care and any out there therapy.

A European mission

The European Union has supported coverage developments and analysis within the area of uncommon ailments extensively for greater than 25 years, nevertheless it wants a European technique to battle uncommon ailments as no Member State can succeed alone.

The 24 European Reference Networks (ERNs), established in 2017 with the help of the European Fee, are an necessary milestone in European cooperation between healthcare techniques and convey collectively a few of the greatest professionals and researchers within the EU throughout virtually all areas of medication and healthcare. This makes it simpler to share expertise in analysis, present remedies and generate data and analysis for European sufferers with uncommon ailments.

The EESC has been supporting a complete EU strategy that takes under consideration all of the wants of individuals dwelling with uncommon ailments since 2009. In 2022, the Committee issued an opinion which reiterates this request and requires EU options to mitigate the on a regular basis affect of uncommon ailments in each private {and professional} life.

The detailed conclusions of the convention will likely be printed on the EESC web site quickly.

Excessive-level audio system

Organized by the EESC’s Part for Transport, Vitality, Infrastructure and the Info Society, the convention was the one well being occasion promoted by the EU Spanish Presidency. It introduced collectively 50 audio system, 45 EESC members, the European Fee’s Director Normal for Well being and Meals Security, 3 Members of the European Parliament and round 550 members from throughout Europe.

The actual fact is that “uncommon ailments” usually are not uncommon in any respect – they have an effect on the lives of 36 million individuals throughout Europe. It’s a pan-European problem that requires a pan-European answer. The EESC has put ahead a set of suggestions to the EU establishments outlining methods to enhance the lives of individuals affected by uncommon ailments. We want a brand new technique and a brand new European Solidarity Fund to help the monetary burden confronted by these sufferers. The time for motion is now.”

Oliver Röpke, EESC President

We want a European motion plan to strengthen European cooperation between well being techniques and permit sufferers with uncommon ailments to be handled in probably the most appropriate EU Member State. The European Financial and Social Committee has been calling for a complete European strategy. No single Member State could make it alone. Sufferers with uncommon ailments deserve one of the best care, regardless of the place it’s out there in Europe.”

Baiba Miltoviča, President, EESC’s Part for Transport, Vitality, Infrastructure and the Info Society

A robust European Well being Union is a Union that protects and cares for each citizen. On this case, it’s a Union that gives EU options to help sufferers dwelling with a uncommon illness and their households. The EU has proposed measures spanning completely different coverage areas and offering a complete strategy to uncommon ailments. Within the European Well being Union we’re constructing, we’ve an obligation to help individuals dwelling with uncommon ailments and their households. Our efforts will proceed to make a distinction to all these in want.”

Stella Kyriakides, European Commissioner for Well being and Meals Security

Euskadi and its Division of Well being are firmly dedicated to tackling uncommon ailments totally, offering the absolute best care and help to victims. Uncommon ailments are a precedence and a key space of the Division of Well being’s strategic framework. Euskadi’s Registry of Uncommon Illnesses, launched in 2015, is an important instrument to provide these sufferers much-needed visibility.”

Gotzone Sagardui, Minister for Well being, Basque Authorities