Survey results: COVID-19 vaccination of people with rare diseases

Based on current scientific data, vaccination against SARS-CoV-2 is the most effective way to fight COVID-19, prevent a serious course of the disease and save lives, in short to curb the effects of the pandemic on our health and our society.

The Luxembourg government has put in place a prioritization strategy to carry out vaccination in successive phases, based on the vulnerability of people due (1) to their age (phases 2a, 3a, 4a and 5a) and (2) to their pre-existing state of health (phases 2b, 3b, 4b and 5b). Since phase 2, people who are vulnerable because of their state of health were able to register for vaccination via their attending physician or specialist physician. They then received an invitation by post.

ALAN wanted to better understand how people with a rare disease view the COVID-19 vaccination as well as the effectiveness of the strategy for vulnerable individuals. To this end, ALAN ran an anonymous survey amongst the members of the association and the rare disease community in Luxembourg.

The results of this survey have now been published.

Some of the key findings were:

– 83% of people with a rare disease want to (and can) get vaccinated

– half of those people were registered on the priority lists for the national vaccination phases 2b, 3b, 4b or 5b

– 13% of people did not know that they should contact their doctor to be registered on a priority list

– of the people registered on the priority lists, 34% had to wait more than 2 weeks before receiving their vaccination invitation.