About VASCERN

VASCERN, the European Reference Network for Rare Multisystemic Vascular Diseases is dedicated to improving the lives of patients with rare vascular diseases across Europe.

Our main goal is to provide highly specialized and integrated healthcare to patients with rare vascular diseases. We bring together a multidisciplinary team of experts from across Europe with extensive experience in rare vascular diseases, including specialists in cardiology, genetics, otorhinolaryngology, pediatrics, and many others.

We cover various rare vascular diseases such as Marfan Syndrome, Hereditary Hemorrhagic Telangiectasia, Vascular Ehlers Danlos Syndrome, Primary Lymphedema, Moyamoya Angiopathy, Vascular Anomalies and other rare vascular diseases across our 6 rare disease working groups.

What are European Reference Networks?

Up to 36 million people in the EU live with a rare disease. There are more than 6000 distinct rare diseases in the EU. So, whilst one rare disease may affect only a handful of patients, another may touch as many as 245,000. Around 80% of rare diseases are of genetic origin and, of those, 70% already start in childhood.

Health systems in the European Union aim to provide high-quality, cost-effective care. This is particularly difficult however, in cases of rare or low-prevalence complex diseases which affect the daily lives of around 30million EU citizens.

European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex and rare diseases and conditions that require highly specialised treatment.

The ERNs collaborate to review patients’ diagnosis and treatment through ‘virtual’ advisory panels of medical specialists across different disciplines, using a dedicated IT platform. They are also active in the areas of research, setting up registries, developing clinical guidelines, and sharing knowledge and expertise among health professionals and patient organisations.

The first 24 ERNs were launched in 2017, involving more than 900 highly-specialised healthcare units from over 300 hospitals in 26 Member States. As of January 2022, more than 600 new highly specialised hospital units joined the system, bringing the total number of ERN members to almost 1500.

Learn more about the 24 ERNs below:

ERN BOND European Reference Network on bone disorders
ERN CRANIO European Reference Network on craniofacial anomalies and ear, nose and throat (ENT) disorders
Endo-ERN European Reference Network on endocrine conditions
ERN EpiCARE European Reference Network on epilepsies
ERKNet European Reference Network on kidney diseases
ERN-RND European Reference Network on neurological diseases
ERNICA European Reference Network on inherited and congenital anomalies
ERN LUNG European Reference Network on respiratory diseases
ERN Skin European Reference Network on skin disorders
ERN EURACAN European Reference Network on adult cancers (solid tumours)
ERN EuroBloodNet European Reference Network on haematological diseases
ERN eUROGEN European Reference Network on urogenital diseases and conditions
ERN EURO-NMD European Reference Network on neuromuscular diseases
ERN EYE European Reference Network on eye diseases
ERN GENTURIS European Reference Network on genetic tumour risk syndromes
ERN GUARD-HEART European Reference Network on diseases of the heart
ERN ITHACA European Reference Network on congenital malformations and rare intellectual disability
MetabERN European Reference Network on hereditary metabolic disorders
ERN PaedCan European Reference Network on paediatric cancer (haemato-oncology)
ERN RARE-LIVER European Reference Network on hepatological diseases
ERN ReCONNET European Reference Network on connective tissue and musculoskeletal diseases
ERN RITA European Reference Network on immunodeficiency, autoinflammatory and autoimmune diseases
ERN TRANSPLANT-CHILD European Reference Network on Transplantation in Children
VASCERN European Reference Network on Rare Multisystemic Vascular Diseases

Here are more information about the ERNs