Sickle cell disorders (SCD) are rare hematologic genetic disorders that in their severe forms can lead to disability or even death. SCD is mostly prevalent in Africa sub-Saharan regions, but due to the augmented immigration flows, its incidence in Europe has increased and the patient's number will continue to grown. A set of interventions is required at global public health level, as for instance newborn screening. Indeed, the early detection of SCD reduces childhood' mortality and morbidity and it improves the prognosis of the diseases.
To tackle SCD patients' needs in Europe, the ERN-EuroBloodNet together with EURORDIS is establishing the European Network of Sickle Cell Disease Patients' Organisations aiming to provide a centralized European point of contact for patients and caregivers. It will be a bottom-up umbrella network of national and local organizations of SCD patients' advocates.
The ERN-EuroBloodNet decided to act at the local level inviting patients support group and/or motivated patients to EuroBloodNet National Meetings dedicated to the promotion of the project. National Meeting' objectives are: training in patient advocacy, listening to SCD patients' needs and expectations, encourage, if not existent yet, to form a national association/federation/group.
Indeed, relevant results obtained from the national meetings are the consequences those events organized by the ERN had on local patients organizations. For instance, In Belgium an informal national group of patients representative has been created after the meeting held by the EuroBloodNet. Two national patients representatives have been elected for the European Network of SCD Patients Organizations. The brand new informal national group established started to advocate for obtaining a newborn screening's plan at national level. Indeed, from previously meetings held in France, Italy, Spain and Portugal, we have noticed that the implementation of Neonatal and prenatal screening programs into national standardized best practices is a common request raised by those patients advocated.
Congratulations to the Belgian patients group that are requesting to Belgium to include SCD in the newborn bloodspot screening as hemoglobinopathy and as a recognized disability in the National Table of Disabilities.