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!
Around the world, events are being organized to support this 2023 campaign. The ERN-EuroBloodNet Healthcare providers also participate:
The team of Dr. Silverio Perrota and Dr. Maddalena Casale has participated in the Rare Disease Day event organized by the Campania Regional Rare Disease Coordinating Centre.
The experts of the affiliated Partner (National Coordination Hubs) from Luxembourg have organized a whole day with conferences for the general public in the morning, and up-to-date conferences for health professionals in the afternoon. In parallel during the afternoon, interactive workshops will be conducted for the general public. Discover the agenda of the event organized on the 28th of February to raise awareness!
The team of Dr. Elena Cela and Dr. Cristina Belendez joins the Rare disease Day campaign.
The team of the Dr. Aurelio Maggio and Dr. Lorella Pitrolo is celebrating together the Rare Disease Day!
The expert team of Dr. Alberto Piperno and Dr. Paola Corti supporting the Rare Disease Day!
Several actions are organized in the Universitätsklinikum Freiburg to participate in the Rare Disease Day. The team of Dr. Charlotte Niemeyer and Dr. Barbara Zieger will be involved.
Next 3rd of March the Center of Rare Diseases (FZSE) organizes an event for school kids. It is designed for early scientific experimentation for adolescents aged 13-16 years. The Center for Congenital and Acquired Blood Disorders organizes two sessions. Study physicians and medical technical assistants from the coordination study centre of EWOG Studies will show different blood and bone marrow smears under the microscope. Another fascinating part will be a poster session with different clinical pictures and therapy methods, for example, "New therapy approaches in haematology and immunology" or "Disorders of the blood coagulation system". In the afternoon, there will be a charity run. All collected funds will be donated to three patient organizations.
Additionally, an Expert Symposium dedicated to the Rare Disease Day will be held on the 4th of March 2023. The Symposium is open for experts as well as affected persons and patient organizations. They hope to attract attention and interest in rare diseases among the population, especially young people.
The consortium Member from Barcelona has organized different actions in the framework of the Rare Disease Day. On the 28th of February will be held the Nano Rare Disease Day, an opportunity to present the last advances in Nanomedicine in rare disease treatment.
Next 6th of March, a conference for people living with rare diseases will be held at the auditorium Sant Joan de Déu Pediatric Cancer Center of Barcelona. The Member representative Dr. Rubén Berrueco will participate in the round table focused on research.
The team of the Vall d’Hebron all together for the Rare Disease Day! During the 28th of February, Dr. Cristina Diaz de Heredia, Dr. David Beneitez Pastor and the rest of the healthcare team together with the patients will participate in the creation of a hand-painted mural at the entrance of the Children's Hospital. Moreover, an exhibition of photos of patients with rare diseases will be exhibited in the lobby of the Children's Hospital.
Next 3rd of March, a conference in the framework of the Rare Disease Day will be held in the centre.
