The ERN-EuroBloodNet together with EURORDIS by establishing the European Network of Sickle Cell Disease Patients' Organisations aims to provide a centralized European point of contact for patients and caregivers. Secondary objective is to create synergies among existing national patients support groups and finally objective is to encourage the creation of national patients association in those country where patients association do not exist yet.
First step overtaken by the task force has been to define the characteristic of the European Network of SCD Patients' Organisations:
- A bottom-up umbrella network of national and local organizations of SCD patients' advocates
- Each Country is represented by two spokespersons. A spokesperson is a national representative that advocate on behalf of all the national SCD patients' organizations. The role is the mediation among the Euroepan Netwotk of SCD Patients' Organisations and the national patients support groups.
- Among all spokespersons, a representative one will become ePAG for the ERN-EuroBloodNet.
Second step overtaken by the task force has been to define how to plan the action itself of the establishment of an European Network of SCD Patients' Organisations.
- Identify SCD Patients support groups existing in Europe.
- It has been consulted the Repository of Patients Association created by Orphanet and by ENERCA (the European Network of Rare and Congenital Anemia established before the ERN-EuroBloodNet).
- It has been asked to ERN-EuroBloodNet SCD experts and Red Blood Cell Expert to provide the contact of associations if existing in their country.
- If no support group exist, together with SCD expert members, it has been identified motivated patients, that is to say patients that would have like to operate as patients advocate.
- Invite Patients support group and/or motivated patients to National Meetings. National Meeting are an occasion to present the project of the establishment of an European Network of SCD Patients organisations and to listen to SCD patients' needs and expectation.
- Encourage, if not existent yet, to form a national association/federation/group
- Countries reached by national meetings elect their national representatives.
- First meeting where the national representatives elected will meet for planning chart of conduct and actions.
- Organizing educational sessions for empowering patients advocates (for instance ASCAT 2019, ASCAT 2020)
Those Patients Associations have taken part to the National meetings organized by the ERN-EuroBloodNet:
Associazione Pazienti Drepanocitici Padova (AMD)
Libera Associazione contro la Talassemia CATANIA
Fondazione Italiana Giambrone
Associazione Bambini Afflitti Drepanocitosi (A.B.A.D)
Associazione Italiana Drepanocitici Torino
French Meeting and/or participation to the Elections of the French Representatives
FMDT SOS Globi - Fédération nationale des associations de malades drépanocytaires et thalassémiques
SOS Globi 64
SOS Globi 77
SOS Globi 93
SOS Globi 94
SOS Globi 95
SOS GLOBI Aquitaine
SOS Globi Occitanie
SOS Globi Paris
SOS Globi Rhône-Alpes
A. S. A. D. 972
Guadeloupe Espoir Drépanocytose (GED)
Espoir Hope Elikia
SICKeLINK by Sos Globi Paris
ASAFE - Asociación Española Enfermedad FALCIFORME
APPDH Associação Portuguesa de Pais e Doentes com Hemoglobinopatias