The so-called Programme for Rare Undiagnosed Conditions PrOZA should lead to a faster and more efficient diagnosis in patients. The PrOZA team will consist of a geneticist, an internist, a neurologist, and an internist-nephrologist. The format already exists in the US, but is new to Belgium. "We need to drastically shorten the time of diagnosis for ultra-rare diseases", says internist Steven Callens, who will be part of the team. "I know we can do this with a specialised squad. As far as I know, this is a structural first in our country."
Patients will only be treated by the team after being forwarded by another doctor. Dr Callens: "We need the patient's file in advance, so we can help those patients to whom we think we can truly be an added value." These aren't many. Only 5 out of every 10,000 people suffer from what is considered a 'rare disease', this is about 60,000 to 100,000 people in the entire country. But because there are no less than 8,000 of these illnesses, a correct diagnosis is often very hard to make. 44% of patients are initially diagnosed incorrectly.
The Flemish Patient Platform is happy with the initiative. "It's a good thing that hospitals are combining their expert forces", declares Chairwoman Ilse Weeghmans to De Morgen. "But there should also be more expertise centres, because there aren't enough of those for the many different rare diseases that exist out there."
Meanwhile, Catholic University of Leuven Hepatology Professor David Cassiman also likes the idea, but is slightly sceptical: "The smaller your team, the bigger the chance you take the patient on an endless diagnostic odyssey that is unnecessary or can even be dangerous."