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EU strategy: Better care for people with rare diseases!
On February 28, 2025, Rare Disease Day focuses on improving patient care in the EU through networks.
EU strategy: Better care for people with rare diseases!
On 28 February, we will once again draw attention to the challenges faced by over 30 million people in the EU suffering from rare diseases. In order to improve the diagnosis and treatment of these diseases, the EU project JARDIN was launched, which is largely coordinated by the Medical University of Vienna. Mag. Alexander Herzog, Secretary General of PHARMIG, emphasizes the need for better networking of knowledge and specialist knowledge. “Networking is an essential step to further improve the care of people with a rare disease,” he explains.
JARDIN aims to further integrate the European Reference Networks (ERNs) - a fundamental element of EU health policy to improve care - into national health systems. These ERNs were founded to promote the exchange of expertise across national borders, especially since the diagnoses and treatments for rare diseases are often only available in a few specialized centers. This is particularly important because only about five percent of rare diseases have an approved specific therapy, such as the Federal Ministry of Health reported.
Goals and challenges of the project
With a budget of 18.75 million euros until 2027, the project will develop various recommendations to help optimize treatment pathways and referral systems. In addition, special attention is paid to the use of ERNs for undiagnosed diseases. Herzog sees key opportunities in Austria's active participation in the project's various work packages: "This is the only way the jointly developed strategies and measures can be better adapted to the special structures of our health system."
In addition, the implementation of these suggestions should facilitate the selection of suitable experts and the recruitment of study participants for clinical trials, which can be crucial for patients with rare diseases. The pharmaceutical industry in Austria is confident that the initiative will significantly advance research and area-specific treatment, especially given the challenge that 20 percent of clinical trials in the EU already include patients with rare diseases, according to the European Medicines Agency report.