Rare diseases, of which some 7,000 have been identified so far, affect around 36 million patients across the European Union. 95 per cent of those diseases have no specific treatment. Many patients organise themselves in civil associations to ask for more research, more home care facilities, more funding and standard protocols for early diagnosis and treatment, based on best practices across hospitals and countries.
No single Member State, hospital, or research centre can cover the funding and facilities providing diagnostic and treatment for all rare diseases. Only concerted action at European level, facilitating exchanges of best practices and co-operation between hospitals, public authorities and patient associations can be effective.
As an institution representing civil society organisations in the EU, the European Economic and Social Committee (EESC) also represents patient associations' interests. At their request, we issued a dedicated opinion and organised a large conference in 2023, asking the European Commission to put together an EU action plan on rare diseases.
“Only concerted action at European level, facilitating exchanges of best practices and co-operation between hospitals, public authorities and patient associations can be effective”
Following the conference, things are moving. The Commission's department responsible for the EU's health policy, DG Sante, and the 24 hospital co-ordinators of the European Reference Networks on rare diseases from across the EU will gather again from 7 March to 8 March at EESC premises to launch the Joint Action on Rare Diseases – JARDIN, a project led by the EU Member States and some neighbouring countries.
Grassroots organisations and civil society associations are essential to promote action at EU level. While many EU policies will be put on hold in the coming months due to the European Parliament elections in June 2024, I strongly believe that we should double down on the work on rare diseases. The EESC will continue its action and is already planning a joint conference to take place under the Hungarian presidency of the EU in Budapest.
Read more about Rare Disease Day on our Rare Disease Hub or in our Rare Disease supplement.