The European Reference Network on rare hematological diseases, ERN-EuroBloodNet, in collaboration with Eurordis, is establishing the European Network of Sickle Cell Disease (SCD) Patients Organisations: a bottom-up umbrella network of national and local organisations of SCD patients' advocates, whose objective is to give a strong representation of the disease and make its needs visible at the European level.

SCD is an inherited disorder of the red blood cells. Being a lifelong chronic condition, SCD can lead to disability or even premature death in its severe forms. Up to now, SCD is one of the few rare anemias that do not have, in every country in Europe, an adequate educational contributionfor patient's awareness on daily management of the disease. SCD is indeed traditionally endemic in African and Middle East countries but their frequency has increased recently in Europe due to migration and mobility flows. Therefore, the patients' educational needs are not explicitly covered, since the awareness level of the disease and the presence of the patients' organisations at the national level are extremely varied from country to country. This is even more reinforced by the fact that those patients often face integration difficulties, being a population largely coming from third countries, with less facility to access care services.

The structuring of the European Network of SCD patients' organisations aims to create, within the ERN-EuroBloodNet, the conditions for the development of a strategic European patients' group. The European Network of Sickle Cell Disease Patients' Organisations will provide a centralised European point of contact for patients and caregivers. It will support the synergy among existing national support groups. Communications could be disseminated through EuroBloodNet website and social media. Finally, it will support policies on rare diseases to be implemented to ensure that patients' needs are at the heart of health and research policies.

ERN-EuroBloodNet is therefore working to organise events that encourage the meeting of SCD patients and their families at the local level, in the countries where this problem is most prevalent. The ERN is also promoting educational activities addressed to SCD patients in order to encourage their formation as advocate and expert patients. This is how ERN-EuroBloodNet is providing a representation of the European SCD community able to meet patients' needs and facilitate access to care.