ERN - European Reference Network
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European Reference Networks (ERNs) are virtual networks involving reference centers across Europe. They aim to address complex or rare diseases and conditions that require highly specialized treatment and focused expertise and resources. Rare patient cases can be discussed by a "virtual" advisory group of medical specialists across different countries and disciplines on a dedicated and secure IT platform developed by the EU Commission specifically for ERNs. In this way, it is medical knowledge and expertise that travels – rather than patients having the comfort of a supportive home environment.
ERNs are based on Directive 2011/24 / EU European Parliament and of the Council, according to which European citizens have the right to cross-border healthcare. The European Union lays down rules to facilitate access to safe and high-quality cross-border healthcare and promotes healthcare cooperation between Member States.
The goal of health systems in the European Union is to provide quality and cost-effective care, which is, however, particularly difficult in rare or low-prevalence complex diseases or conditions. 5 to 000 rare diseases affect the daily lives of around 8 million people in the EU. ERNs have been developed to ensure the same quality of care for patients with rare conditions.
More information on European Reference Networks (ERNs)
The first ERNs were launched in March 2017 and involved more than 900 highly specialized healthcare units from more than 300 hospitals in 26 Member States. 24 ERNs work on a number of thematic issues, such as bone disorders, childhood cancer and immunodeficiency.
Below is an overview of the National Centers of Highly Specialized Care for Patients with Rare Diseases at the University Hospital in Motol - published in the Bulletin of the Ministry of Health of the Czech Republic No. 1/2022
National network of centers for highly specialized care for patients with rare diseases
Published pursuant to Section 113a (4) of Act No. 372/2011 Coll., On health services and conditions for their provision, as amended
The list of centers is published in the Ministry of Health Bulletin No. 1/2022
| Highly specialized care center for rare endocrine diseases
European Reference Network on Rare Endocrine Conditions (Endo-ERN) European Reference Network for Rare Endocrine Diseases |
| University Hospital in Motol, V Úvalu 84, 150 06 Prague 5, IČ: 00064203 - head of the center prof. MUDr. Zdenek Sumnik, Ph.D. |
| Highly specialized care center for rare and complex epilepsy
European Reference Network on Rare and Complex Epilepsies (EpiCARE) European reference network for rare and complex epilepsy |
| University Hospital in Motol, V Úvalu 84, 150 06 Prague 5, IČ: 00064203 - head of the center prof. MUDr. Petr Marusic, Ph.D. |
| Highly specialized care center for rare neurological diseases
European Reference Network on Rare Neurological Diseases (ERN-RND) European Reference Network for Rare Neurological Diseases |
| University Hospital in Motol, V Úvalu 84, 150 06 Prague 5, IČ: 00064203 - head of the center prof. MUDr. Petr Marusič, Ph.D., prof. MUDr. Pavel Kršek, Ph.D., MD Alena Zumrová |
| Highly specialized care center for rare kidney disease
European Rare Kidney Diseases Reference Network (ERKNet) European Reference Network for Rare Kidney Diseases |
| University Hospital in Motol, V Úvalu 84, 150 06 Prague 5, IČ: 00064203 - head of the center prof. MUDr. Pavel Seeman, Ph.D. |
| Highly specialized care center for rare bone diseases
European Reference Network on Rare Bone Disorders (ERN-BOND) European Reference Network for Rare Bone Diseases |
| University Hospital in Motol, V Úvalu 84, 150 06 Prague 5, IČ: 00064203 - head of the center doc. MUDr. Ondrej Soucek, Ph.D. |
| Highly specialized care center for rare facial anomalies and rare diseases of the ear, nose and throat
European Reference Network on Rare craniofacial anomalies and ENT disorders (ERN-CRANIO) European reference network for rare facial anomalies and rare ear, nose and throat diseases |
| University Hospital in Motol, V Úvalu 84, 150 06 Prague 5, IČ: 00064203 - head of the center doc. MUDr. Jan Bouček, Ph.D. |
| Highly specialized care center for syndromes at risk of cancer
European Reference Network on genetic tumor risk syndromes (ERN-GENTURIS) European Reference Network for Cancer Risk Syndromes |
| University Hospital in Motol, V Úvalu 84, 150 06 Prague 5, IČ: 00064203 - head of the center prof. MUDr. Milan Macek, DrSc. MHA |
| Highly specialized care center for rare congenital malformations and intellectual disabilities
European Reference Network on Rare Congenital Malformations and Rare Intellectual Disability (ERN-ITHACA) European reference network for rare congenital malformations and intellectual disabilities |
| University Hospital in Motol, V Úvalu 84, 150 06 Prague 5, IČ: 00064203 - head of the center prof. MUDr. Milan Macek, DrSc. MHA |
| Highly specialized care center for rare respiratory diseases
European Reference Network on Rare Respiratory Diseases (ERN-LUNG) European Reference Network for Rare Respiratory Diseases |
| University Hospital in Motol, V Úvalu 84, 150 06 Prague 5, IČ: 00064203 - head of the center prof. MUDr. Petr Pohunek, CSc. |
| Highly specialized care center for the rare autoimmune and immunodeficient diseases
Rare Immunodeficiency, Autoinflammatory and Autoimmune Diseases Network (ERN-RITA) European reference network for rare autoimmune and immunodeficient diseases |
| University Hospital in Motol, V Úvalu 84, 150 06 Prague 5, IČ: 00064203 - head of the center prof. MUDr. Anna Sediva, DSc. |
| Highly specialized care center for rare birth defects
European Reference Network on inherited and congenital anomalies (ERNICA) European reference network for rare birth defects |
| University Hospital in Motol, V Úvalu 84, 150 06 Prague 5, IČ: 00064203 - head of the center prof. MUDr. Michal Rygl, Ph.D. |
| Highly specialized care center for the rare cancer of adults
European Reference Network on Rare Adult Cancers (solid tumors) (EURACAN) European Reference Network for Rare Adult Cancer |
| University Hospital in Motol, V Úvalu 84, 150 06 Prague 5, IČ: 00064203 - head of the center MUDr. Katerina Kopeckova, Ph.D. |
| Highly specialized care center for the rare neuromuscular diseases
European Reference Network for Rare Neuromuscular Diseases (EURO-NMD) European reference network for rare neuromuscular diseases |
| University Hospital in Motol, V Úvalu 84, 150 06 Prague 5, IČ: 00064203 - head of the center MUDr. Jana Haberlová, Ph.D., MD Radim Mazanec, Ph.D. |
| Highly specialized care center for rare heart diseases
Gateway to Uncommon And Rare Diseases of the HEART (GUARD-HEART) European Reference Network for Rare Heart Disease |
| University Hospital in Motol, V Úvalu 84, 150 06 Prague 5, IČ: 00064203 - head of the center prof. MUDr. Jan Janousek, Ph.D. |
| Highly specialized care center for the rare pediatric hemato-oncological diseases
European Reference Network for Pediatric Cancer (haemato-oncology) (PaedCan-ERN) European reference network for rare pediatric haemato-oncological diseases |
| University Hospital in Motol, V Úvalu 84, 150 06 Prague 5, IČ: 00064203 - head of the center prof. MUDr. Jan Starý, DrSc. |