Belgian MEP Frédérique Ries (Renew Europe) claimed in the plenary meeting of April 10th 2024, that 30 million European citizens suffer from a rare disease. She made that claim in the context of the biggest pharmaceutical reform Renew Europe puts its shoulder under. Do 30 million Europeans really have a rare disease? According a study on rare diseases from 2019, the claim is mostly true.
EUfactcheck contacted Ries and has received a brochure from the European Commissions directorate-generalforresearchandinnovation. This department is responsible for the European Union’s research and innovation policy and the coordination of research and innovation activities. It conducted a study in February 2024, and concluded that up to 36 million European citizens suffer from a rare disease.
Defintion rare disease
According to the Research and Innovation Department from the European Commission a rare disease occurs when it affects no more than 1 person in 2000. A disease is found ‘ultra-rare’ when it occurs less than 1 person in 50.000 people and a disease is called ‘orphan’ when no cure for it exists. Unfortunately, the brochure from the directorate-general for research and innovation provided by Ries was not transparent, because the researchers did not share their methods nor sources. Therefore, EUfactcheck reached out to the Belgian national public health institute Sciensano and received a reply from Anabelle Calomme, scientist at the Rare diseases team from Sciensano and manager of Ophanet Belgium Database, which is an international resource coordinated by the French National Institute for Health and Medical Research and funded by the European Commission that collects knowledge on rare diseases.
Estimated numbers of rare diseases
Calomme provided EUFachtcheck with an 2019 article ‘Estimating cumulative point of prevalence of rare diseases: analysis of the Orphanet database’. Calomme explained that 3.5% to 5.9% of the world’s population suffers a rare disease, which translates to about 300 million people worldwide. For Europe, this is 30 million people who suffer from a rare disease. This number may seem large, but it is less surprising if one knows that it covers more than 6000 rare diseases. The number of people affected by a specific rare disease remains limited (by definition). This figure is even a conservative estimate, because it does not include rare cancers, infectious diseases and poisonings. According to scientist Calomme, the numbers in this article were obtained by ‘robust analysis’ of publicly available epidemiological data in the Orphanet database.
Conclusion
The claim of Frédérique Ries is mostly true: 30 million European citizens suffer a rare disease. Nevertheless, some factors are not included in the final grade, such as rare cancers, infectious diseases and poisonings. It is, however, important to note that there exist over 6000 rare diseases. This is why the claim Ries has made is mostly true: there are minimum 30 million European citizens with a rare disease. If rare cancers, infectious diseases and poisonings would count as well in the estimation, this number would be higher. Ries’ claim is correct. There are actually even more than 30 million European citizens who suffer from a rare disease if one takes extra factors into account.
RESEARCH | ARTICLE © Alexandra Cares Morales & Stien Vanden Bosch, Thomas More University, Mechelen, Belgium.
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