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improve diagnosis and treatment among women overall and pregnant women in particular, to provide education and raise awareness, and to strengthen leadership skills through workshops, social media and using educational materials. WFH supported a national forum on women with bleeding disorders and haemophilia in Columbia. The Nicaraguan Association of Hemophilia lobbied the Nicaraguan government to add desmopressin and tranexamic acid to the country’s registry. The Hemophilia Society of Bangladesh is optimising resource use to create awareness of VWD at the same time as

What was your early experience of haemophilia nursing? As someone with severe haemophilia B, my first experience of a comprehensive haemophilia care centre was in Dublin in the mid 1970s, and I’ve been involved with the Irish Haemophilia Society since the early 80s. In the early days, there was just a haematologist and a nurse and, from the beginning, it was the nurse who played a pivotal role not just in advising patients and families, but in coordinating, organising and delivering care. In Ireland, one of these nurses was Margaret King, who encapsulated the

physiotherapist who is a member of the CPHC. The CPHC maintains a network of physiotherapists in haemophilia care to provide a high level of physiotherapy management, education and research for people with haemophilia and related bleeding disorders [ 33 ] . In the current study, CPHC members formed the expert panel for the application of the Delphi approach. All CPHC members who attended the Canadian Hemophilia Society Annual Conference in 2017 were eligible to participate. This meeting was chosen for the purposes of the study to minimise attrition, to allow the research to be

used for outpatient infusions at the end of a ward at the old fever hospital in Lawn Road, soon became inadequate. In 1965, the Haemophilia Society donated a large caravan but by 1970, the centre had 180 patients and had outgrown the caravan. This time the Haemophilia Society funded a prefab extension on ward 7 at Lawn Road. At this time most treatment was in the form of infusions of fresh frozen plasma. In 1970 the centre took part in the trial production and clinical evaluation of cryoprecipitate and its production was soon taken over by the North London Blood

positive picture I ensured I did paint Especially when Dad looked like he would faint. I avoided the tricky bits like arthropathy Affecting the joints like the ankle, the knee. And even when there was a lengthy pause I definitely avoided inhibitors. I had all the leaflets and lots of info To help with my teaching before they got up to go. There’s one thing I mentioned – a priority I told them about The Haemophilia Society. But I needn’t have worried our chat it went well And Mum through December continued to swell. We’d taken precautions to prepare for the birth A time

’re right.’ Because, ultimately, it’s only an opinion, isn’t it?” Health professionals and parents have long been protective of people with haemophilia and, in the past, they have discouraged sports participation and physical activity. The culture has now changed: the benefits of an active lifestyle are well established and access to sports and leisure is increasing for everyone, regardless of personal circumstances. Now, the Haemophilia Society’s advice (‘In general any risk factors associated with sports are outweighed by the inherent benefits of staying active’) is

information about the kind of service a haemophilia centre should provide ... we had to make it up as we went along” Further meetings followed and, in 1981, Maureen and Patricia Turk from Treloar’s School and College for young people with disabilities in Alton, Hampshire, set up the Haemophilia Nurses Association (HNA), with recognition from the Haemophilia Centre Directors organisation. The aims of the HNA included promoting improved patient care, providing training for newly appointed nurses and establishing links with organisations such as the Haemophilia Society, and

[ 21 ] , suggesting a need for the professionals who work with them to assist PwH in developing knowledge of pain experiences and the language to describe them. Pain in PwH is widely recognised, and HTC social workers have the potential to provide support and skills to address these concerns. Social work practice in haemophilia care and pain management The predominant effort of the Canadian Hemophilia Society (CHS) has been to improve patient-centred care and QoL while supporting the search for a cure [ 22 ] . The standard of practice for Canadian Social Workers in

programmes. This leads to a high rate of undiagnosed and untreated patients in these countries [ 8 ] , which in turn results in an increased rate of joint disability and poor quality of life among their haemophilia population [ 9 , 10 , 11 ] . Efforts to improve haemophilia diagnosis and care in Mali, in sub-Saharan Africa, were boosted in 2012 with the establishment of a national haemophilia patients organisation, the Malian Haemophilia Society (Association Malienne de Lutte contre l’Hémophilie / AMALHEC), which is recognised as a national member organisation (NMO) of

The paper by Franchesca Fong and colleagues from the Royal London Hospital in this edition of The Journal of Haemophilia Practice fills an important void in the literature regarding the management of dental care in children with inherited bleeding disorders [ 1 ]. The vast majority of papers that have been published, and the protocols that have been adopted by haemophilia societies around the world, have concentrated on dental care in the adult population. A number do mention children but this is the first paper from the United Kingdom that concentrates on this