Volume 2, July 2006 - EHC

Volume 2, July 2006THE UKHAEMOPHILIA SOCIETYFounded in 1950, the Society’s mission is to ensurethe best possible treatment, care and supportfor people with bleeding disorders and theirfamilies. We work with people who have haemophiliaand von Willebrand’s and we support theirfamilies.The Society has an office in London with 10 paidstaff, including a chief executive, an administrationteam (3), a services team supplying informationand advice (4), and a fundraising team (2).We have a board of 12 trustees. We have approximately2,000 full members and another 3,000people on our database.We have a medical advisory panel consisting ofdoctors, nurses, physiotherapists and social workers.We are a member of the World Federation ofHemophilia and the EHC. We are also members ofthe Haemophilia Alliance, which consists of ourselves,doctors, nurses, social workers, physiotherapistsand scientists. The Alliance has put togethera national service specification which hasrecently been updated.bodies, including the Pan Thames HaemophiliaConsortium and the Specialised HealthcareAlliance. We also work strategically with pharmaceuticalcompanies in order to maximise thesupport we can provide to people with haemophilia.One of our main challenges is ensuring continuedfunding from the Government for recombinanttraining. Treatment in the UK is supplied via thegovernment’s Department of Health from over 90haemophilia centres around the country. Until2003 only newly diagnosed pwh and childrenwere given recombinant treatment. From 2003 athree year rollout began of recombinant treatmentfor all ages. Government has announcedthis will be available 2006-7 but there is no statementon the continuation of treatment after thisdate.Margaret UnwinChief Executive29 June 2006We hold events including an annual conferenceand our AGM, three children’s activity weekendsand various other one day events. We producepublications and fact sheets and have three websites.We campaign on behalf of people with bleedingdisorders and are currently campaigning for apublic inquiry into the contaminated blood issue.We raise awareness of issues, including at themoment a public relations campaign to highlightwomen’s bleeding disorders.We work strategically with other voluntary organisationswho share our aims and with health services.We have representatives on key health15