All 24 European Reference Networks (ERNs) has launched a dedicated website and social media campaign to collect information to help health professionals to find support for Ukrainian patients with rare diseases: diagnosis, treatment, advice.
Some of those Ukrainian citizens will however suffer from one of the known 6000 rare diseases, like about 6% of the European Union Population. For those disorders, sometimes very rare, expertise is often lacking in many regions or even countries, and treatments may be very expensive and/or difficult to obtain in many centres.
Please don't hesitate to contacting us for rare haematological patients in need of highly specialized diagnosis or treatment for their rare disease: firstname.lastname@example.org
On Friday the 26th of November 2021, the European Reference Networks (ERNs) Board of Member States, as given in the Implementing Decision 2014/287/EU Article 10, has approved the application of 620 new Members.
For the ERN-EuroBloodNet a total of 40 applications for new members from 12 Member States have been received, among which 36 are approved. Welcome you on board!
Are you willing to include your recently published manuscript in the ERN-EuroBloodNet website dedicated section?
Only 1 step is needed: Include ERN-EuroBloodNet's endorsement on it!
For further details contact the ERN-EuroBloodNet Dissemination Manager: email@example.com
The Clinical Patient Management System (CPMS), a secure web-based application to support the networks in bringing expert specialised care to all patients in Europe for the diagnosis and treatment of rare or low prevalence complex diseases or conditions across national borders.
It allows virtual consultation across national borders, ensuring that the needed expertise can travel to the patient, instead of the other way around.
We invite you to join the platform and participate in discussions of cases with other colleagues or present your ones!
For further details please contact the ERN-EuroBloodNet CPMS Project Manager: firstname.lastname@example.org
Since January 2021, a partnership between, ERN-EuroBloodNet and the European Hematology Association (EHA) Guidelines Committee has been established aiming to promote and support the creation and adoption of guidelines for the diagnosis and treatment of hematologic diseases.
In this context, the first joint project was the development of a clinical decision-making tool on Methemoglobinemia, under the co-charing of ERN-EuroBloodNet experts Achille Iolascon (AOU Federico II - Naples) and Paola Bianchi (Foundation IRCCS Ca'Granda Ospedale Maggiore Policlinico, Milan).
The final manuscript titled "Recommendations for diagnosis and treatment of methemoglobinemia" has been published in the American Journal of Hematology in September 2021 with the acknowledgement of EHA and ERN-EuroBloodNet. Among the authors of the Recommendations, multiple experts from ERN-EuroBloodNet members in the different Member States are included!!
Keep informed about the latest information on Rare Hematological Diseases!
HCPs have the possibility to request an extension of their disease coverage!
The meeting has promoted the interactions among stakeholders for new key actions in the field of rare hematological disorders.