History

2004
-September | EFAPH Foundation in Rennes – France (founding members: the national HH-associations of France, Belgium, Spain)

2005
-First grant from the Novartis Foundation.
-September | The National HH-Associations of Germany, Ireland, Italy, Portugal, The Netherlands and UK joined EFAPH (General Meeting in Rennes). EFAPH started building up close relations with the European Iron Club (EIC).

2006
-EFAPH opened an office in Brussels, housed by “Delegation de Bretagne – Europe”

2007
-EFAPH first contacts with major European patients’organisations (The European Cancer Patient Coalition, Rare Diseases Europe – EURORDIS, European Patients’Forum – EPF, the International Diabetes Federation – IDF).
-First partnerships with the Pharmaceutical Group of the European Union (PGEU) and the Standing Committee of European Doctors (CPME).
-Participation in EURORDIS annual congress in Lisbon.
-June to September | Comparative study of phlebotomy management within Europe (results presented at EFAPH General Meeting in London).
-September | The national HH Association of Norway joined EFAPH (General Meeting in London)

2008
-EFAPH became an associate member of EURORDIS and an active member of EPF.
-First contacts with the DG Sanco to apply for project calls financed by European funds.
-Participation in EURORDIS annual International Congress in Paris.
-September | The National HH Association of Hungary joined EFAPH (General Meeting in St Gallen)
-December | In cooperation with the Health Ministry of Romania, organisation of a workshop on Haemochromatosis in Bucharest with a view to founding a national association.

2007-2009
-Contribution to a Novartis survey on how to live with Haemochromatosis, how to inform and treat Haemochromatosis patients (sample of patients from 4 countries).

2009
-Participation in EURORDIS Annual International Congress in Athens and in EPF General Meeting in Brussels.
-May and December Meetings in Athens with specialists MDs and with the Greek Alliance of Rare Diseases with a view to founding a Greek Association. EFAPH first contacts with major International HH Patients’ Associations (Australia, Canada and USA) in June (BioIron World Congress in Porto).
-Participation in the Value + Policy Recommendations (EPF – Vilnius, November 2008 and Gothenburg, December 2009) with the leaders of EU patients ‘ organisations and health actors (voicing out the opinions of 150 million patients through EU Health Programmes).

2010
-New EFAPH Board and new projects.
-Assistance to the foundation of Belgian Association (HBA)
-4 EFAPH country members organized local events in June as a first step towards the 2011 EU Haemochromatosis Day.
-Preliminary contacts with the ENVI Commission of the EU Parliament in the perspective of the EU HH Day.

2011
-Lunch-Debate at the European Parliament (September 20) in cooperation with the ENVI Committee of European Medical Practitioner (CPME).
-Foundation of the International Alliance of Haemochromatosis Associations (IAHA) in Vancouver (Canada) on EFAPH’s initiative (Pr Pierre Brissot).
-September, the Brussels AGM decided to establish a Scientific Committe (Pr Gra├ža Porto, President).
-EFAPH has joined Health First Europe (HFE) as an active member.

2012
-Further to the 2011 Lunch-Debate at the European Parliament, the European Commission replies to the Written Question from the ENVI Committee (February): official recognition of HH specifics.
-EFAPH became a full member of EURORDIS.
-September, Rennes (France), the AGM decided to start brainstorming on HH European Reference Network (ERN).
-October, HEMONews Bulletin 1 (EFAPH’s newsletter).

2013
-The Icelandic Group joins the Norvegian Association, the Danish Association is officially established.
-In London, April 2013, on occasion of the BioIron Society (IBIS) Congress, EFAPH played a major role in activating International Alliance of Haemochromatosis (IAHA) with representatives of the 5 major continents (Canada, Australia, South Africa, Brasil and Europe).
-A partnership with the French Blood Centre (EFS) was signed to promote blood donation from HH patients in Europe.
-EFAPH officially applied to the European Commission for its RAGIODEN Project (HH ERN).
-More countries joined the HH Week (June): Spain, Portugal, Ireland, France, Germany…
-HEMONews Bulletin 2.

2014
-10th EFAPH anniversary!
-The Belgian Flemish Association (HVV) joined EFAPH.
-EFAPH adopted a new logo for better visibility of HH.
-A pilot project was implemented in France (Yvelines district) to increase GPs awareness and to promote early diagnosis.
-First clinical thesis on “Early diagnosis and GPs” (Paris-Descartes VII University).
-Website and new webmaster transfered from Germany from Portugal.
-AGM in Verona (Italy): preliminary contact to found a second regional association in Italy (Pr Domenico Girelli).
-HEMONews Bulletin 3.

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