Collaboration is a life-saver for patients with a rare disease

28 February 2020

To offer patients with a rare disease the best possible care, national and international cooperation is crucial. For this UZ Leuven is the leader in both Belgium and Europe, as a member of 19 European Reference Networks (ERNs) for rare diseases and as chairman of 7 of the first 11 Flemish networks per rare disease cluster. “By investing and participating in these networks, together we can map our expertise, share life-saving knowledge and roll out optimal trajectories for each patient," according to professor De Langhe, rheumatologist with a specialisation in systemic diseases.

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19 European Reference Networks

In order to give every patient with a rare disease the best possible care, exchanging expertise is crucial. As a university centre, UZ Leuven has been investing in networking both in- and outside the hospital for a number of years.

Internationally UZ Leuven is the only hospital in Europe to be a member of no less than 19 European Reference Networks (ERNs) for rare diseases. For some of these networks, e.g. for the domains of rare immunodeficiencies, auto-inflammatory and autoimmune disorders (ERN RITA) and rare congenital disorders (ERNICA), we are the only Belgian hospital. The collaboration ensures that live-saving knowledge and exceptionally rare cases can be shared and that patients don't have to travel abroad so often.

Pooling expertise

On a national level, the Flemish university hospitals, the general hospitals (Zorgnet-ICURO), the physician's society (Domus Medica) and a number of patient associations join forces in the Vlaams Netwerk Zeldzame Ziekten (the Flemish Network for Rare Diseases). Today, this umbrella network already harbours 11 specific networks per cluster of rare diseases, seven of which are chaired by a UZ Leuven physician, such as the network for rare congenital metabolic syndromes, the network for rare respiratory disorders and the network for rare neuromuscular disorders. The aim for the future is to establish a Flemish network for 24 rare disorder clusters, parallel to the ERNs.

Not every centre can offer the same level of expertise for every rare disorder, but together we can optimise scientific research and clinical care for these rare disorders.
prof. dr. De Langhe, rheumatologist with a specialisation in systemic diseases

“Patients with a rare disease end up at physicians and hospitals all over Flanders. By creating a network and by mapping the expertise of every hospital, we can roll out optimal trajectories for each patient,” professor De Langhe says. “Not every centre can offer the same level of expertise for every type of rare disorder, but together we can optimise scientific care and the clinical care for these rare disorders. A speedy diagnosis and follow-up for each patient through a collaboration between first, second and third line of function hospitals is the target."

50 multidisciplinary teams

Also within the hospital, UZ Leuven focusses on a fast diagnosis and adequate treatment of rare disorders. Exactly because of the rarity of the more than 7,000 different disorders, it is impossible to gather all relevant knowledge in one team, which is why UZ Leuven uses a modified type of organisation to refer all patients with a suspected rare disease as efficiently as possible to one of the more than 50 multidisciplinary teams.

Referral goes through an efficient waterfall system which involves over 300 physicians from various disciplines. In total these UZ Leuven teams annually treat more than 33,000 patients in one of dozens specialised care programmes. For 34 of these rare disorders there is an agreement with the RIZIV for specialised care.

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Last edit: 2 February 2021