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Patients Organizations supporting group

Patients Organizations supporting group

ERN-EuroBloodNet Patients Organizations Supporting Group (POSG) is the designation used for those Patients Organizations (Local, National, European or International) that are actively involved in the ERN-EuroBloodNet in the implementation of specific ongoing projects. The collaboration of POGS is crucial for the running of the Network because they add an high values to actions guaranteeing a patient-centered approach.  

Patients Organizations supporting group

Country Patients Organization name Website
Belgium Association Belge des Drépanocytaires a.s.b.l. https://www.facebook.com/groups/429799470363581/?locale=es_L...
Belgium Association Collectif Drepanocytose https://www.facebook.com/collectif.drepanocytose/
Belgium European Sickle Cell Federation (ESCF) https://escfederation.eu/
Belgium Le petit Prince de Montzen http://www.galileonet.be/pmb/opac_css/index.php?lvl=notice_d...
Belgium Sang pour sang https://www.facebook.com/Sang-pour-Sang-109232047444984
Canada Lymphoma Coalition https://lymphomacoalition.org
Cyprus Pancyprian Association of Sickle Cell Disease (PASIDREMIA) https://cypatient.org/osak-members/%CF%80%CE%B1-%CF%83%CF%85...
France A.S.A.D. 972 – Association de Soutien aux Actions autour de la Drépanocytose 972 https://www.asad-martinique.net/
France APIPD - Association pour l'information et la prévention de la drépanocytose https://apipd.fr/
France APIPD Martinique - Association Pour l'Information et la Prévention de la Drépanocytose https://apipd.fr/
France Association Dorys https://dorys.org/
France Association Petit Cœur https://www.facebook.com/PETITCOEURangola/?locale=bg_BG
France Drepa 31 https://www.drepa31.fr/
France Drépa'Est: Association de lutte contre la drépanocytose. https://www.facebook.com/groups/107957022575863/
France Drepacare https://drepacare.com/
France Drepagreffe https://www.drepagreffe.fr/
France Drépaguyane https://www.facebook.com/profile.php?id=100009607570727&lst=...
France Drepan'ose Internationale https://www.helloasso.com/associations/drepan-ose-internatio...
France Drepano Doubout https://assoce.fr/waldec/W9G2000435/DREPANO-DOUBOUT
France Drépavie https://drepavie.org/
France Drepenfance78 https://www.facebook.com/drepenfance78?paipv=0&eav=Afaz0emYw...
France Drep’Agir https://www.facebook.com/DrepAgir971/
France Ensemble Leucémie Lymphomes Espoir (ELLyE) https://www.francelymphomeespoir.fr/
France Espoir Hope Elikia https://www.ehe-drepa.org/
France EVAD: ET VIVRE ADULTE avec la drépanocytose éducation thérapeutique et drépanocytose https://evadrep.org/
France Fédération nationale des Associations de Malades Drépanocytaires et Thalassémiques (FMDT SOS Globi) https://sosglobi.fr/
France Femmes en Devenir https://www.helloasso.com/associations/femmes-en-devenir
France Globdrep https://www.facebook.com/globdrepa
France Guadeloupe Espoir Drépanocytose (GED) https://www.facebook.com/GuadeloupeEspoirDrepanocytose/?loca...
France Mayotte Drep’Action https://www.facebook.com/profile.php?id=100072246135224
France Pan European Sickle Cell Alliance (PESCA) https://www.facebook.com/PESCA-Pan-Europan-Sickle-Cell-Allia...
France Réseau des enfants malades de l’hémoglobine (REMH) https://remh.net/
France SICKeLINK by SOS Globi Paris https://sickelink.com/
France SOS Globi 64 https://www.facebook.com/sosglobi64/about?ref=page_internal
France SOS Globi 77 Seine et Marne https://www.facebook.com/SOSGlobi77/?locale=fr_FR&paipv=0&ea...
France SOS globi 93 Seine-Saint-Denis https://sosglobi93.sosglobi.fr/
France SOS Globi 94 Val-de-Marne https://sosglobi94.sosglobi.fr/
France SOS Globi 95 Val d'Oise https://www.facebook.com/people/SOS-GLOBI-Val-Doise/10007901...
France SOS Globi Atlantic https://www.facebook.com/sosatlanticglobi?fref=ts
France SOS Globi Auvergne https://www.facebook.com/profile.php?id=100069837745790
France SOS Globi Grand Est https://grand-est.sosglobi.fr/
France SOS Globi Nouvelle Aquitaine https://www.facebook.com/people/SOS-GLOBI-Nouvelle-Aquitaine...
France SOS Globi Occitanie https://occitanie.sosglobi.fr/
France SOS Globi Occitanie https://occitanie.sosglobi.fr/
France SOS Globi PACA https://paca.sosglobi.fr/
France SOS Globi Picardy https://www.facebook.com/people/SOS-Globi-Picardie/100070180...
France SOS Globi Rhône-Alpes https://rhone-alpes.sosglobi.fr/
France SOS Globinord https://globinord.blogspot.com/
France VIV’ASC patients, familles, drépanocytose https://www.facebook.com/people/Vivasc-Patients-Familles-Dre...
Germany IG Sichelzellkrankheit und Thalassämie - IST e. V. https://www.ist-ev.org/
Greece SY.P.PA.DRE.MI.A. - Panhellenic Association for the Protection of Patients with Sickle Cell and Micro-Sickle Anemia https://www.syppadremia.gr/en/
Ireland Sickle Cell & Thalassaemia Ireland http://sicklecellireland.ie/
Ireland Sickle Cell Society Ireland https://sicklecellsociety.ie/about
Italy Associazione Bambini Afflitti Drepanocitosi (A.B.A.D) https://www.facebook.com/people/ABAD-ODV/100079745763403/?pa...
Italy Associazione Italiana Drepanocitici Torino https://www.facebook.com/AssociazioneItalianaDrepanocititciD...
Italy Associazione Malattia Drepanocitica https://www.facebook.com/p/Associazione-Malattia-Drepanociti...
Italy Fondazione Italiana “Leonardo Giambrone” per la Guarigione dalla Talassemia e Drepanocitosi http://www.fithadleonardogiambrone.com/
Italy United Onlus http://www.unitedonlus.org/
Portugal Associação Portuguesa de Pais e Doentes com Hemoglobinopatias (APPDH) https://www.appdh.org.pt/
Spain ALHETA - Asociación española de lucha contra las hemoglobinopatias y talasemias https://sid-inico.usal.es/centros_servicios/alheta-asociacio...
Spain Asociación Española de la Enfermedad Falciforme (ASAFE) https://www.asafefalciforme.org/
Sweden Association Suisse Drépano http://suissedrepano.ch/
Switzerland Chronic Lymphocytic Leukemia Advocates Network (CLLAN) https://www.clladvocates.net/
The Netherlands OSCAR Netherlands https://www.oscarnederland.nl/
The Netherlands Stichting IXL https://www.facebook.com/sikkelcelziekte/
United Kingdom Sickle Cell & Young Stroke Survivors http://www.scyss.org/about-us/
United Kingdom Sickle Cell Society https://www.sicklecellsociety.org/
United Kingdom Solace Sickle Cell Support Group https://www.facebook.com/solacesupportgroup/
United States Cutaneous Lymphoma Foundation https://www.clfoundation.org