Welcome to ERN-RND

ERN-RND statement for RND patients:

Since March 2020, 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"

COVID-19 vaccination in rare neurological diseases

Many patients with rare neurological diseases (RND) are wondering if their disease is bringing specific risk factors to a Covid-19 vaccination or if they are especially vulnerable for the disease and should get vaccinated on a high priority.

As there are very limited reports on the course of Covid-19 infections in patients with RND and only few RND patients who received the vaccine, it is hard to provide a well-grounded answer. This statement will discuss potential risks and benefits to enable an informed decision for patients.

Is COVID-19 vaccination recommended for patients with RND?
As clinical trials have not been conducted in patients with RND there is no data that indicates specific risks from COVID vaccination for patients with RND including cerebellar ataxia, chorea, dystonia, frontotemporal dementia, hereditary spastic paraplegia, leukodystrophy or atypical Parkinsonism. We expect patients with RND to have a similar response to the vaccine as the general population. Potential side effects of the vaccination besides local reactions at the injection side include fever and nausea. This may cause temporally worsening of symptoms of the RND. The safety profiles of the approved vaccines so far suggest that the benefit of preventing COVID-19 infection outweighs the risk of vaccine reaction. One exception are patients with Aicardi-Goutières syndrome who should not be vaccinated with the mRNA based vaccines.

If you have further diseases that especially affect the lung or the immune system you should discuss your individual situation and the respective recommendation with your doctor.

Is COVID-19 vaccination recommended in children with RND?

COVID-19 vaccines have not yet been approved for children. The youngest age tested in clinical trials has been 16 years old. Moderna has already started clinical trials in children age 12- to 17-years-old. At present, only children at very high risk should be considered for vaccination.

Are patients with RND especially vulnerable to COVID-19 and belong to the group that preserves vaccination at highest priority?

Only few RNDs like ataxia telangiectasia cause immune deficiency which qualifies for vaccination in the first wave. Few other RND like Friedreich’s ataxia develop cardiomyopathy or diabetes mellitus. If an RND patient has such comorbidities they should discuss the possibility of obtaining priority for the vaccine with their physician. Several RND go along with swallowing difficulties and the risk of aspiration. However, this constitutes no established risk factor of a severe course of a COVID-19 infection and therefore does not change the general priority for vaccination. Patients in nursing homes belong to the high-risk group that receives highest priority for vaccination independent on the underlying disease.

In general it is important to remember that the best measures to prevent COVID-19 are to adhere to the current infection control procedures: Wear your mask, avoid large gatherings, and remember social distancing.

Further statements on COVID-19 vaccination have been published for ataxia, chorea, dystonia, Parkinson’s and other rare disease groups including mitochondrial diseases, neuromuscular diseases and epilepsies:

https://www.umdf.org/coronavirus/

https://ern-euro-nmd.eu/ern/wp-content/uploads/2020/12/WMS-COVID-19-advice-updated-1-12-2020.pdf

https://www.parkinsons.org.uk/news/coronavirus-vaccine-and-parkinsons

https://www.movementdisorders.org/COVID-19-Pandemic-MDS/MDS-COVID-19-Vaccine-Statement-for-Patients.htm

https://www.ataxia.org.uk/latest-news/covid-19-vaccine-update/

https://www.dystonia.org.uk/news/covid-19-vaccinations

https://www.alz.org/alzheimers-dementia/coronavirus-covid-19-vaccine

https://www.hda.org.uk/getting-help/covid-19-information-and-advice-hub

https://epi-care.eu/covid-19-vaccines-and-people-with-epilepsy/

 

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 21 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.

These are the disease groups that the ERN-RND covers. By clicking on a box you will be taken to a page that gathers disease specific information collected by our network:

Video available in all EU languages and Norwegian, with or without subtitles here