European reference networks

ERN - European Reference Network

See official website:

https://endo-ern.eu/cs/ern/

European Reference Networks (ERNs) are virtual networks involving reference centers throughout Europe. Their goal is to address complex or rare diseases and conditions that require highly specialized treatment and concentrated knowledge and resources. Rare patients can be dealt with 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 the medical knowledge and expertise that travels - rather than patients who are comfortable staying in 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.

ERN logo

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)

Brochure of all ERNs (, pdf)

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 adult cancer

 

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.

 

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