Sickle Cell Disease World Day 2019!

Sickle Cell Disease World Day 2019!

2019-06-26
Sickle Cell Disease World Day 2019!

"It is very important to have the voice from politics, authorities, stakeholders, but also from the patients’ themselves so they can meet together and share the actions they want to perform regarding the disease" B. Gulbis, EuroBloodNet co-coordinator

Sickle cell disease (SCD) is a rare hematologic genetic disorder that, can be associated with chronic, life-impairing and -threatening conditions with inherent serious health sequelae that can lead to disability or even death. Although SCD are traditionally endemic in African and Middle East countries, their frequency have increseased recently worldwide due to migration and mobility flows, becoming a growing global health problem and a challenge to be tackled by European healthcare systems.

On the occasion of SCD World Day, the International day of SCD meeting for patients and carers was held last 19th June coorganized by the Belgian Hematology Society and ERN-EuroBloodNet in Brussels. The meeting specially addressed the current action being implemented by ERN-EuroBloodNet for the creation of the European network of SCD patients organizations. Béatrice Gulbis, ERN-EuroBloodNet co-coordinator highlighted the importance of having a joint meeting with patients in order “to ensure that we can work altogether in the creation of the network of the different patients organizations. It is very important to have the voice from politics, authorities, stakeholders, but also from the patients themselves so they can meet together and share the actions they want to perform regarding the disease. Accordingly, we organized this meeting with all of them including different topics regarding the creation of the European network of associations. I think it is a very good opportunity also to encourage them to be involved in this action through ERN-EuroBloodNet.”

In this context, we are happy to announce the main actions currently ongoing under the framework of ERN-EuroBloodNet in order to improve the diagnosis, treatment and management of SCD patients:

  1. Establishment of Cross-Border collaboration agreements for Bone Marrow Transplantation on SCD

  2. European patients' registry

  3. Collection of international existing documents for best practices

  4. Endorsement of Newborn screening for sickle cell disease in Europe: recommendations from a Pan‐European Consensus Conference

  5. Organization of preceptorships for health professional 

  6. Creation of the repository of educational and teaching material 

  7. Establishment of an European Network of SCD patients organizations and SCD advocates

  8. Surveys on patients' expectations, quality of life and educational needs

 

More information on each specific action will be available under the dedicated website sections that will be released very soon! Stay tuned!

 

Euro Blood Net