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 methods. The primary objective: to supply higher diagnoses, therapy and care to sufferers with uncommon illnesses.
Picture Credit score: European Financial and Social Committee (EESC)
A European technique to offer folks with uncommon illnesses the care they want within the EU Member State the place the perfect therapy is out there.
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 methods to combat uncommon illnesses and provides sufferers entry to probably the most superior data and therapy wherever they’re within the European Union.
What uncommon illnesses are
Uncommon illnesses are circumstances which can be normally power and typically disabling or life-threatening. There are at the moment over 7 000 uncommon illnesses affecting 8% of the EU inhabitants, roughly 36 million folks.
Round 80% of them are genetic, of which 70% start in childhood. As much as 95% of those illnesses haven’t any particular therapy or remedy. Examples embrace: amyotrophic lateral sclerosis (ALS), sickle cell and hemophilia.
The complexity of those illnesses and the shortage of information and data make it troublesome for sufferers, relations and healthcare professionals to obtain a well timed prognosis, applicable well being and social care and any accessible therapy.
A European mission
The European Union has supported coverage developments and analysis within the discipline of uncommon illnesses extensively for greater than 25 years, nevertheless it wants a European technique to combat uncommon illnesses as no Member State can succeed alone.
The 24 European Reference Networks (ERNs), established in 2017 with the assist of the European Fee, are an essential milestone in European cooperation between healthcare methods and produce collectively a few of the greatest professionals and researchers within the EU throughout nearly all areas of drugs and healthcare. This makes it simpler to share expertise in prognosis, present therapies and generate data and analysis for European sufferers with uncommon illnesses.
The EESC has been supporting a complete EU strategy that takes under consideration all of the wants of individuals dwelling with uncommon illnesses 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 illnesses in each private {and professional} life.
The detailed conclusions of the convention will likely be revealed 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 Common for Well being and Meals Security, 3 Members of the European Parliament and round 550 individuals from throughout Europe.
The actual fact is that “uncommon illnesses” aren’t uncommon in any respect – they have an effect on the lives of 36 million folks throughout Europe. It’s a pan-European problem that requires a pan-European resolution. The EESC has put ahead a set of suggestions to the EU establishments outlining methods to enhance the lives of individuals affected by uncommon illnesses. We want a brand new technique and a brand new European Solidarity Fund to assist 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 methods and permit sufferers with uncommon illnesses 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 illnesses deserve the perfect care, irrespective of the place it’s accessible 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 assist sufferers dwelling with a uncommon illness and their households. The EU has proposed measures spanning totally different coverage areas and offering a complete strategy to uncommon illnesses. Within the European Well being Union we’re constructing, we’ve got an obligation to assist folks dwelling with uncommon illnesses 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 illnesses totally, offering the absolute best care and assist to victims. Uncommon illnesses are a precedence and a key space of the Division of Well being’s strategic framework. Euskadi’s Registry of Uncommon Ailments, launched in 2015, is a vital software to offer these sufferers much-needed visibility.”
Gotzone Sagardui, Minister for Well being, Basque Authorities
Supply:
European Financial and Social Committee (EESC)
