New European Reference Networks to improve care provided for rare diseases
Improvements are expected in the treatment provided for rare diseases as European Reference Networks launch their activities next year. The purpose of the reference networks is to improve diagnosis, treatment, and research, as well as the provision of high quality health care to patients, whose condition requires specialist care and concentration of resources. On 15 December, the European Reference Network Board of Member States unanimously approved 23 applications to establish European Reference Networks. Together, these reference networks will improve the treatment of nearly all rare diseases in Europe.
Rare disease units at Finland's university hospital districts were approved as members of the following European Reference Networks:
• European Reference Network on Rare Congenital Malformations and Rare Intellectual Disability (ITHACA)
• Gateway to Uncommon And Rare Diseases of the HEART (GUARD-Heart)
• European Reference Network on Rare and Undiagnosed Skin Disorders (ERN-Skin)
• European Reference Network on Rare craniofacial anomalies and ENT disorders (CRANIO)
• European Rare Kidney Diseases Reference Network (ERKNet)
• European Reference Network on Rare Multisystemic Vascular Diseases (VASCern)
• European Reference Network for Rare Neuromuscular Diseases (EURO-NMD)
• European Reference Network on Rare Adult Cancers (solid tumours) (EURACAN)
• European Reference Network on GENetic TUmour RIsk Syndromes (ERN GENTURIS)
• European Reference Network for Paediatric Cancer (haemato-oncology) (PaedCan-ERN)
• European Reference Network on Rare and Complex Epilepsies (EpiCARE)
The reference networks will act as centres for medical education and research, for information dissemination and for assessment of rare diseases. The reference networks must ensure that care is patient-centred, and they must respect the patient's right to influence on their own care.
The members of the reference networks will be published in January. It is expected that other Finnish members will also join the aforementioned as well as other reference networks in the future.
The working group appointed by Ministry of Social Affairs and Health and the university hospital districts' rare disease units will help the Finnish members of reference networks in networking with other actors in their field of speciality.