HEALTH IN A
HEALTH IN A POST-PANDEMIC EU Rare no more? A European collaboration called Screen4Care bets on genetic testing and new tech to speed up diagnoses for rare diseases. By GABY GALVIN For people living with a rare disease, it can take at least five years to get the right diagnosis – but that timeline could get a lot shorter if a European Union-funded effort succeeds. Rare diseases affect more than 300 million people worldwide, including more than 30 million in Europe, and delayed diagnoses can make it harder for patients to find relief, given treatments are also scarce. There are more than 6,000 known rare diseases worldwide, yet only 5% have at least one approved treatment. In order to be catalogued as a rare disease in the EU, the condition must affect fewer than 1 in 2,000 people. These diseases include forms of neurological conditions, intellectual disabilities, some cancers, autoinflammatory diseases and other health issues, and they can be disabling and even life-threatening. 21
