EU strategy: better care for people with rare diseases!

EU strategy: better care for people with rare diseases!

On February 28, the challenges that have confronted over 30 million people in the EU who suffer from rare diseases will be faced again. In order to improve the diagnosis and treatment of these diseases, the EU project Jardin is launched, which is largely coordinated by the Medical University of Vienna. Mag. Alexander Herzog, General Secretary of the Pharmig, emphasizes the need for better networking of knowledge and expertise. "Networking is an essential step to further improve the care of people with a rare illness," he explains.

Jardin pursues the goal of integrating European reference networks (Ern)-a fundamental element of EU health policy to improve care-more into integrating into national health systems. These Erns were founded to promote the exchange of specialist knowledge across national borders, especially since the diagnoses and therapies of rare diseases are often only available in a few specialized centers. This is particularly important because only about five percent of the rare diseases have an approved specific therapy, such as reports.

goals and challenges of the project

With a budget of 18.75 million euros by 2027, the project will develop various recommendations to help optimize treatment paths and transfer systems. In addition, special attention is paid to the use of the Erns for non -diagnosed diseases. In the active participation of Austria, Herzog sees key opportunities in the various work packages of the project: "Only in this way can the jointly developed strategies and measures be better adapted to the special structures of our health system."

In addition, the implementation of these proposals is intended to make the selection of suitable expert: inside and the recruitment of study participants for clinical exams easier, which can be of crucial importance for patients with rare illnesses. The pharmaceutical industry in Austria is confident that the initiative will significantly advance research and area -specific treatment, in particular in view of the challenge that 20 percent of the clinical exams in the EU already include patients with rare diseases, as can be seen from the report of the European Medicines Agency.