- We need to build public awareness of rare diseases. We want the platform to be created by experts who deal with rare diseases in cooperation with NGOs," said Health Minister Katarzyna Sójka during a meeting with the Rare Diseases Council. The information platform, which is one of the goals of the Rare Diseases Plan, has been in operation since Wednesday.
Rare Disease Information Platform is now up and running
Published Oct. 18, 2023 11:44
- The Rare Diseases Information Platform is a comprehensive source of information primarily for patients and their families, but also for health care professionals and public institutions, said Health Minister Katarzyna Sójka.
As Prof. Anna Kostera-Pruszczyk of the Rare Diseases Council noted, work on the platform had been going on for more than a year.
- Together with the Ministry of Health, the e-Health Center and experts from a number of centers - both those that already have the status of national expert centers for rare diseases and those that should officially obtain it in the near future - we will do our best to ensure that patients, doctors, physiotherapists and other professionals who take care of patients have access to valuable content on the Rare Diseases Information Platform," Prof. Anna Kostera-Pruszczyk pointed out.
The service is the implementation of one of the six areas of the Rare Disease Plan. The guiding idea behind the Platform is to increase the availability and exchange of knowledge about rare diseases among all stakeholders in the health care system, especially doctors and patients.
The target groups using the Rare Diseases Information Platform are: patients with rare diseases, their families and patient organizations, doctors and other health care professionals (graduates in nursing, midwifery, physiotherapy, dietetics, speech therapy, public health), medical students (including medical, nursing, physiotherapy, dietetics, medical analytics, medical biotechnology, public health), teachers (especially special education teachers and pedagogy students), health care organizers and the general public.
The platform is a portal created by a group of experts who deal with rare diseases in their daily practice. It has a Scientific Council and an editorial team, and the Rare Diseases Council is responsible for implementing the entire Rare Diseases Plan. On the IT side, the Rare Diseases Platform was prepared by the Rare Diseases System Team of the eHealth Center, which is dedicated to the Rare Diseases Plan.
The first installment of the Rare Diseases Platform contains information important for rare disease patients to find their way around the health care system, and is intended to facilitate access to information important for clinical practice. The Platform will be expanded and populated with content, particularly with regard to disease descriptions and educational materials. The information on the Platform will be regularly updated. We invite doctors and other professionals and patient organizations to co-create the Rare Diseases Platform.
