Humanitas Cancer Center which is a reference center for the treatment of leukemia, myelodysplasia and Myeloproliferative neoplasms, has played a key role in the birth of EuroBloodNet. This is a European reference network for rare hematological diseases, an innovative platform at an European level.

We spoke with Professor Matteo Della Porta , Head of leukemia and myelodysplasia hematology at Humanitas Cancer Center.

 

Rare diseases and European directives

Rare diseases are those affecting fewer than 5 per 10,000 individuals in the general population. To provide high quality care to patients who are affected by such disease it is necessary to have resources and expertise .

Almost all hematologic malignancies fall under rare conditions. Each has increasing complexity in the optimization of diagnostic procedures and the choice of the individual-level treatment. There are also subgroups of patients with unmet clinical needs.

In light of this situation, since 2002 the scientific hematological community has engaged in promoting certain key aspects of the European directive in the field of rare diseases. Namely the creation of a shared platform in healthcare, European cooperation for the diagnosis and follow-up of patients. As well as the implementation of information and communication technologies. Finally, to ensure patient’s access to health services, regardless of where they live.

They have counted more than 7,000 rare diseases, grouped into 23 groups by the European Union. Furthermore in March 2016 they published a notice of interest for the establishment of reference networks (European Reference Network for rare diseases, ERN) to supports and develop policies and ad hoc funding.

 

The birth of EuroBloodNet

Thanks to its experience over a decade in the field of networking and support of patients, the European scientific hematological community (European hematology Association, EHA) has therefore presented a proposal for the creation of a network of reference for rare hematological myelogenous line diseases(acute and chronic leukemia, myelodysplasia, myeloproliferative neoplasms, mastocytosis, bone marrow aplasia / bone marrow failure, congenital anemia, thrombocytopenia, coagulation disorders and hemochromatosis).

The project includes EuroBloodNet hematological centers of excellence in over ten European countries, including Humanitas Cancer Center. In December the European commission approved EuroBloodNet as the ERN for rare hematological diseases.

 

The EuroBloodNet actions

EuroBloodNet aims to:

  1. Improve equality in the provision of health care in the field of rare hematologic diseases in Europe. Achieved through the creation and coordination of centers of excellence and the collection of patient data in disease registries.
  2. Facilitate the harmonization of hematological training specialists on rare diseases in Europe, through continuous medical education programs.
  3. Provide inter-professional counseling and encourage knowledge sharing and the exchange of clinical information. This will help to decrease the number of un-diagnosed or misdiagnosed patients and improve healthcare.
  4. Promote the dissemination and implementation of specific guidelines for each disease and their constant updating.
  5. Promote the development of innovative clinical trials and the creation of platforms and technologies to support research and the identification of new drug targets.

Once operational, EuroBloodNet will become a fundamental structure to improve services for the clinical management of patients with rare blood diseases. Thus providing patients with the best care possible.