Project Description
During the event, Mrs. Muscat called for both local and European strategies to ensure that people with rare diseases receive the best possible treatment, care, and access to their rights. “We are advocating for a national plan for rare diseases that takes into account the specific needs of these individuals. Unlike more common conditions, rare diseases aren’t grouped together in a single treatment approach. For example, with cancer, there is a unified treatment protocol and specialized hospitals. But with rare diseases, each condition is unique, requiring tailored care.”
Mrs. Muscat pointed out that, in some cases, no medications are available for certain conditions, or they are prohibitively expensive. She also emphasized the lack of a standardized protocol for healthcare workers to follow when treating individuals with rare diseases.
Minister for Health, Jo Etienne Abela, affirmed that the government is committed to simplifying care processes and advancing research. He stressed the need for more global investment in rare disease research.
Ian Vassalo, the Shadow Minister for Mental Health, noted the increasing prevalence of such illnesses and called for more treatments to be added to the national formulary to address these conditions.
The Speaker of Parliament, Anglu Farrugia, praised the work of the Alliance, describing it as a model for anyone striving to build a just society.
