Volume 2, July 2006 - EHC

Volume 2, July 2006XX° EHC CONFERENCE,Parma 18-20 May 2007PRE-MEETINGSalsomaggiore Terme, 16-17 May 2007The Italian Federation of Haemophilia (Fedemo),representing 31 local associations distributedthroughout the national territory, safeguards anddefends the rights of haemophilic patients acrossItaly (around 5000).Fedemo is a relatively young federation but,quite committed to share the skills and experiencesacquired during its relatively short life. This isthe reason that brought Fedemo to be the promoterof the International Haemophilia Forum,whose principal aim is exchanging best practicein haemophilia care and building bridges betweenWestern and Eastern Europe and betweenEurope and Mediterranean Countries.Knowledge and experience exchange is also akey objective of the European HaemophiliaConsortium strategy (WFH partnership has alsobeen requested).Best practice data will be collected, providedand discussed by the participants arriving fromall parts of Europe.NMO delegates (between 10 to 20),Haemophilia Centre Directors (between 10 to 20),Transfusion Medicine Experts (10 to 20 circa),Public Health professionals or Highly SpecialisedService Commissioners (between 10 to 20) representingthe Institutions will come together todiscuss and exchange ideas and experiencesduring the four simultaneous workshops.The Results and remarks will be discussedpublicly during the XX° EHC Conference and willbe available on line shortly after.A restricted number of grants will be madeavailable to participants coming from countrieswith a low GDP.English is the official language. Russian translationwill be provided.XX° EHC CONFERENCE,Parma 18-20 May 2007The XX° Conference of the European HaemophiliaConsortium (EHC) will take place in Parma, city of art,food and music in May 2007 (18-20).The European Haemophilia Conference (non profitorganization in the near future) is an umbrella of 44Haemophilia Associations and Societies within Europeand is taking important steps to improve the quality oflife of people with haemophilia across Europe.During the EHC annual conferences that take place,on a rotating basis, in Eastern and Western Europeancountries, the observer can count on a friendly and collaborativeatmosphere that favours information andexperience exchange between the participants: doctors,patients, public health professionals and people representingthe industry.The XX° Conference will provide an overview on themain topics in the scientific and social internationalagenda.The opening session is focused on the three strategictopics on the agenda of the future of haemophlia care:role of research, health care professional motivation andrecruitment and capacity building promotion.The second session is dedicated to patients’ rightsand duties across nations and to the role and the challengesof the European Commission.Child Management and family support are the topicsof the third session, with a particular focus on psychologicalneeds and ways to meet them.The simultaneous workshops are the natural extensionof this session providing a particular overview on camps,physical activities and family support.The third session is the core of the Conference:“Building registries and networks across Europe”.Examples from regional, national and internationallevels will be provided.Is a European international network on haemophiliacare far from becoming a reality?The last session will launch a debate on pre-meetingresults and remarks between the main stakeholders.The Organizing Committee as well as the SteeringCommittee of the EHC hopes to have the pleasure tomeet you in Parma and make the XX° EHC Meeting a success.16