Many for the Rare – building a more equitable healthcare system for rare, incurable and malignant diseases

The third panel discussion was held on June 12, 2024, on the topic Many for the Rare – building a fairer health system for rare, incurable, and malignant diseases.

The discussion participants included:

  • Dr. Ivan Pećin, MD, PhD, Department of Metabolic Diseases, University Hospital Centre Zagreb,
  • Mrs. Jadranka Brozd, Vice President of the Croatian Alliance for Rare Diseases,
  • Mrs. Ivančica Rubido, President of the “Strong as Jakov” association, and
  • Mateja Krznar, Master of Nursing, health educator at the Debra association.

We spoke from the perspective of the most vulnerable – patients, their families – and associations, about the reality of daily life with rare diagnoses and about desirable changes in the health and other systems of the Republic of Croatia.

We critically reflected on the existing situation in the health system and tried to offer a vision of a health system in which patients, as well as professionals and all other interested parties, would be more satisfied.