Since 1 April 2025, patient representatives have joined the Commission for the Reimbursement of Medical Products (CRP) to help better address the real needs of patients. The CRP now includes two representatives from patient associations – one from LUSS and one from VPP. While they are allowed to participate in discussions, they do not have voting rights. In addition, an external expert representing patients will be consulted during the evaluation of innovative medicines.
To further support this initiative, the NIHDI, LUSS and VPP have jointly developed a “patient questionnaire.” This tool is designed to gather insights into how the disease affects patients’ daily quality of life, as well as their experiences with current treatments and new medications.