COVID-19 vaccination in rare neurological diseases

Prepared by Ludger Schöls on behalf of ERN-RND

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.

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

Mitochondrial diseases

Neuromuscular disorders

Parkinson's disease

Parkinson's disease




Huntington's disease