The creation of various European Reference Networks (ERNs) was initiated by the European Union to support patients and their families affected by rare diseases - orphan disorders, requiring specialized knowledge, diagnostics, treatment and resources. The Institute of Psychiatry and Neurology passed the competition procedure and was admitted to the network related to rare neurological diseases - ERN-RND. 

The main goals of this network are:

• a significant increase in the number of patients with rare neurological diseases who have a final diagnosis,
• improving and harmonizing care for patients with rare diseases in all European Union countries,
• introducing improved, uniform treatment algorithms and recommendations into clinical practice in all centers belonging to the Network,
• development of tools for assessing education and training in the field of rare neurological diseases
• collecting reliable data on patients with rare neurological diseases and belonging to the European population in order to better understand these diseases and build new therapeutic strategies,
• defining the qualitative and operational minimum for the functioning of registers of rare neurological diseases.

Disease entities covered by ERN-RND:

• Cerebellar Ataxia & Hereditary Spastic Paraplegias (HSPs)
• Chorea & Huntington's disease
• Dystonias, Neurodegeneration with Brain Iron Accumulation (NBIA) & Paroxysmal Disorders
• Frontotemporal Dementia
• Leukodystrophies
• Atypical parkinsonism: multi-system atrophy, progressive supranuclear palsy and a genetic form of Parkinson's disease
• Atrophy (MSA), Progressive Supranuclear Palsy (PSP) & Genetic Parkinson’s Disease

The Institute's participation as a full member of the European Reference Network (ERNRND) is possible thanks to an evaluation procedure carried out in a competition procedure resembling the accreditation procedure. Networks have been created to connect healthcare professionals whose expertise in rare diseases can help in the correct diagnosis and treatment of difficult cases.

The following activities are carried out within the network:

• Establishing a demographic platform for information collection and clinical assessment of both pediatric and adult patients.
• Collecting information on the number of patients treated in Europe in each disease group covered by the network.
• Improving medical care in relation to diagnosis and standards. Among other things, the virtual Clinical Patient Management System (CPMS) tool will be used for this purpose.
• Making it easier for patients to participate in clinical trials.
• Online training (webinars) for people willing to expand their knowledge in the field of rare neurological diseases.
• Training and international exchanges of health care workers to exchange knowledge and experiences.

Link to the ERN-RND official website https://www.ern-rnd.eu/ 

Contact:

dr hab. n. med. Anna Sułek

e-mail: asulek@ipin.edu.pl

dr n. med. Anna Sobańska

e-mail: asobanska@ipin.edu.pl