The ERN-EuroBloodNet community supports the Rare Disease Day!
Several actions to raise awareness have been organized around Europe.
The Rare Disease Day is dedicated to raising awareness and promoting change for the 300 million people worldwide living with a rare disease, their families, and carers.
The ERN-EuroBloodNet and its community support the Rare Disease Day!
The ERN-EuroBloodNet community tailors together patient-centric initiatives for improving clinical patient management and increasing patients' quality of life. In a nutshell, the Network contributes to innovative, efficient, and sustainable health systems and facilitates access to better and safer healthcare for EU citizens while decreasing the cross-border health barriers existing for information, samples, and patient mobility.
Around the world, events are being organized to support this 2024 campaign. The ERN-EuroBloodNet Healthcare providers also participate:
The experts from the two Belgian ERN-EuroBloodNet Members will participate in the “Round Table” organized by the CUB-Hôpital Erasme dedicated to physicians. The objective is to increase their knowledge about ERNs and rare diseases. Among the experts participating: Béatrice Gulbis (ERN-EuroBloodNet Co-coordinator and CUB-Hôpital Erasme Member Representative) and Sebastian Wittnebel (Jules Bordet Institute Member Representative). Details of the event will be posted on ERN-EuroBloodNet social media channels! Stay tuned!
This Bulgarian Member celebrates the Rare Disease Day with an interview describing our activities. All the details will be published on the hospital website!
On the occasion of Rare Diseases Day, the multidisciplinary team of the National Expertise Center for Rare Diseases-Cutaneous Lymphomas - ERN-EuroBloodNet of the "University General Hospital Attikon" with the Coordinator Director and Scientific Manager of the Expertise Center and Professor of Dermatology of the E. C.P.A. Evangelia Papadavid (Member Representative), the hematologists Vasiliki Pappas (Member Substitute Representative) and Panagiotis Tsirigotis as well as the Radiation Therapist-Oncologist Vasilios Kouloulias, is holding on March 01-02, 2024 at the Royal Olympic Hotel in Athens, a Conference focused on Cutaneous Lymphomas.
Every year, the Organization for Rare Diseases in Hungary (RIROSZ), organizes a special event for the Rare Disease Day is held on the last Saturday of February. This year it was held in the northwest part of Hungary in Sopron. Experts from the University of Debrecen (ERN-EuroBloodNet center) gave two lectures from the Department of Internal Medicine Division of Hematology and Rare Disease: “Myopathies causing differential diagnostic difficulty on our special Rare disease outpatient practice” by Boglárka Brúgós and György Pfliegler (Member Substitute Representative) and “Hungarian Participation in the JARDIN project aimed at the integration of ERN” (György Pfliegler, Member Substitute Representative).
“Malattie Rare: un confronto sullo stato dell'arte in Policlinico” is the event organized by the ERN-EuroBloodNet experts of the Foundation IRCCS Ca'Granda Ospedale Maggiore Policlinico, Milan, such as, Flora Peyvandi (Member Representative) last 28th of February 2024. The objective of this event is to speak about rare diseases with the heads of the hospital, clinicians, patients, and all possible stakeholders. Discover all the details in the program!
The Member based in Barcelona has organized the event entitled “Jornada de malalties minoritàries”. The objective is to shine a light on the diagnosis and treatment of these diseases. During the event, held on the 28th of February, patients and families gave their testimonies. Experts also participated, among them, Maria del Mar Mañú Pereira (Scientific Director & ENROL Coordinator), who provided a talk focused on the “The informed consents in rare diseases”.
During the morning of the Rare Disease Day, 29th of February 2024, the Centre Hospitalier du Luxembourg organized a conference focused on shining a light on rare diseases. Discover all the details of the program!
This year the Ministry for Health and Active Ageing in Malta is organising a National Day workshop concerning patient rights and Rare Diseases. Experts from the Mater Dei Hospital (ERN-EuroBloodNet Affiliated partner National Coordination Hubs) participate.
Today 29th of February, the ERN-EuroBloodNet and the community want to contribute to International Rare Disease Day by supporting the voice of RD patients, and spreading patients' needs and expectations!