ERN-RND statement for RND patients:
Over the past 3 months, hospitals and outpatient clinics all across Europe have undertaken all conceivable organizational measures not only to effectively treat patients with Covid19, but also protect other patients from infection with the corona virus SARS-CoV2.
Particularly for patients with chronic rare disorders, regular appointments with their treating specialized physician may be crucial to maintain adequate treatment and to prevent sometimes irreversible further deterioration of the disease.
Due to the protective measures, in most instances these appointments can now be made without major risk of infection.
If you or your relative have a disease that requires treatment, please contact your center and inquire about the local regulations for making an appointment with your treating physician.
We understand that members of the rare neurological disease community may be concerned about their health in regards to the current COVID-19 pandemic.
Please check the following websites for official and regularly updated information on COVID-19:
World Health Organization
European Centre for Disease Control
National information resources for the public on COVID-19
US Centers for Disease Control and Prevention
British Society for Genetic Medicine
European Academy of Neurology recommendation: "RNDs in the COVID-19 era: Suggestions for information to patients & caregivers"
Welcome to ERN-RND
your network for Rare Neurological Diseases in Europe
The ERN-RND is a European Reference Network established by the EU to support patients and families affected by rare neurological diseases (RND) which requires much specialised knowledge, treatment and resources.
Some diseases are so rare that the necessary knowledge might not be available in the patient’s nearest health centre or country. The patient doesn’t travel but knowledge does. Specific information about the diseases ERN-RND covers can be found in the Disease Knowledge section.
European Reference Networks (ERNs) are virtual networks connecting healthcare professionals around Europe with expertise in rare diseases which allows them to discuss a patient’s diagnosis and care, with their consent, via an online IT platform called the Clinical Patient Management System (CPMS).
ERN-RND unites 41 of Europe’s leading expert centres in 22 Member States and includes highly active patient organisations. Centres are located in Austria, Belgium, Bulgaria, Croatia, Czech Republic, Denmark, Estonia, Finland, France, Germany, Hungary, Italy, Latvia, Lithuania, Luxembourg, Malta, Netherlands, Poland, Slovenia, Spain and the UK.