With the creation of the European Reference Networks (ERNs), the European Union has provided the requirement and the means for empowering patients' community, raising awareness and promoting therapeutic education on rare diseases for patients' organizations or patients and their families. ERNs could provide cross border health assistance to Rare Hematological Diseases Patients, as they are structured for knowledge sharing and coordination of health care across the European Union. ERNs could provide a solid visibility to rare diseases patients' voices, bringing their needs and expectations to the attention of the public at large, scientific community and policymakers.
The solid plan carried by the ERN-EuroBloodNet focuses on: patients' advocacy's actions, promoting patient involvement in networks, organization of educational workshops and webinars, investing in patient therapeutic educational programs at International congresses, providing cross border health patients assistance, improving health outcomes from the patient-centered approach and giving visibility to patients actions and patients organization collaboration on the Network's website.
Thanks to the close collaboration with expert Healthcare providers, EURORDIS, ePAGS and European, National or Local patient's representatives, the ERN is achieving relevant outcomes and playing a crucial role in Europe for improving clinical patient management and increasing patients and caregivers quality of life.
Today 28th of February, the ERN-EuroBloodNet, the ERN devoted to Rare Hematological Diseases, wants to contribute to International Rare Disease Day by giving voice to RD patients, spreading patients' needs and expectations!