What is it about?
At the beginning of 2022, the King Baudouin Foundation published a report on the state of affairs for patients with a rare disease in Belgium (cfr publication FR or NL on www.kbs-frb.be). Five priority actions were defined, one of which can be described as:
Patients with a rare disease have the right to receive integrated, patient centered and qualitative care adapted to their needs; this requires the development and implementation of a model for integrated care according to the principle ‘highly specialized care in an expert center if needed, generalized care close to home when possible’.
As the development of an appropriate model of care was described as an urgent need by patients and caregivers, the Fund Francine & Henri Plisnier and the Fund Dr & Ms Charles Tournay-Dubuisson , managed by the King Baudouin Foundation, decided to launch a joint call for action-oriented research on this topic.
This call welcomes large interdisciplinary projects that develop a comprehensive model of care for people with a rare disease. However, smaller projects that address a specific problem and as such lead to a real improvement in a particular area of care, or projects that contribute to the development of the comprehensive model, will also be considered.
Project of Fabienne Dobbels supported by the Fund Dr & Mrs Charles Tournay-Dubuisson and the Fund Francine & Henri Plisnier - Idiopathic Pulmonary Fibrosis is a poorly kn…