Rare diseases and COVID-19: what the records of 58 million people show
Eight rare diseases carried a clearly higher risk of dying from COVID-19, even after vaccination, in a study covering 331 rare diseases and 58 million people.
The question
Each rare disease affects few people, but together they touch many lives. During the pandemic it was unclear which rare diseases carried the most danger from COVID-19, because no one had looked at so many of them in one place.
What we did
We analysed national health records covering more than 58 million people in England. We counted how common 331 rare diseases are, who they affect, and how many people with each of them died of COVID-19.
What we found
People with rare diseases were nearly five times more likely to die from COVID-19 than the general population. Eight rare diseases carried significantly higher risk even in fully vaccinated people, with infertility disorders and kidney diseases among the highest. Some rare diseases were also much more common in particular ethnic groups, which points to health inequalities.
Why it matters
Rare diseases deserve a place in plans for future pandemics, vaccination policy and NHS services. The study also has limits. Long waits for diagnosis mean data on rare diseases is incomplete, and with two waves of the pandemic it is hard to separate the effects of different variants. It shows the power of population-wide health records to bring rare diseases into view.