Between 6,000 and 8,000 rare diseases affect the daily lives of around 30 million people in the Europe where many children are affected. Rare and complex diseases can cause chronic health problems and many of them are life threatening. For example there are almost 200 different types of rare cancers alone and each year more than half a million people in Europe are diagnosed with cancer.
The impact of these diseases on sufferers and their families is substantial and patients often go undiagnosed due to lack of scientific and medical knowledge or difficulty in finding medical expertise on the specific disease.
To assist in finding information on specific diseases, virtual networks like European Reference Networks (ERN) are able to bring together healthcare providers across Europe to provide data on complex or rare medical conditions requiring highly specialized treatments, knowledge, and resources.
In addition, ERNs are in place to develop new innovative care models, eHealth tools, medical solutions, and devices. The ERNs are going to boost research through large clinical studies and contribute to the development of new pharmaceuticals, plus ensure a more efficient use of costly resources.
On March 1, 2017, benefiting from a range of European Union funding mechanisms such as the “Health Program”, “Connecting Europe Facility”, and the EU research program “Horizon 2020”, the ERNs started their work using European cross-border telemedicine tools.
The first ERNs now in place involve more than 900 highly specialized healthcare units from over 300 hospitals in 26 Member States. Twenty four ERNs are working on a range of medical issues including bone disorders, childhood cancer, and immunodeficiency.
Go to https://ec.europa.eu/health/rare_diseases/European_reference_networks/erf_en for more information on ERNs.