THE HAEMOPHILIA SOCIETY
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Mission Statement
We are the only UK charity for everyone affected by a genetic bleeding disorder. Membership is free and open to all. Founded in 1950, we aim to achieve wellbeing for around 25,000 people in the UK diagnosed with a bleeding disorder, their families and carers. We help people with long-term conditions to lead fulfilling lives, make informed choices and to support and inspire others. For all those affected by bleeding disorders, we will provide information and services, build community and mutual support, influence government health and welfare policies, including advocating for those impacted by contaminated blood, and involve people in making decisions about their own care.
About This Cause
We are the only UK-wide charity for everyone affected by a genetic bleeding disorder; a community of individuals and families, healthcare professionals and supporters. We could not deliver this level of support without the generosity of our supporters – people just like you! The money donated will make a huge difference to our community. We are here for people throughout their lives, wherever they live in the UK. Whether your child, a family member, a friend, or you yourself have a bleeding disorder, our services, information and support are here to help. Our Newly Diagnosed Weekends for families whose child has recently been diagnosed with a bleeding disorder connect the people who need it most. For many parents, this is the first time they will spend time away from home since their child’s diagnosis and for most children, it’s the first time they spend away from their parents’ supervision, thanks to our trusted childcare facility. Parents hear from specialist nurses, physiotherapists and psychologists, enabling them to feel more confident in their child’s ability to live a full life, and work alongside their haemophilia centres. Our annual Youth Camp helps children learn to be adventurous in a safe environment, often as their first time away from their parents after diagnosis. Spending a week with other children who have the same experience is life changing for those that attend and helps them build confidence, make friends and feel less isolated. Our Talking Red campaign helps women with bleeding disorders to feel confident in managing and talking about their periods. We help them understand their options with family planning and what care may be available to them. The women who come to our events leave feeling empowered, connected and confident in living their day-to-day lives. Our information for older members of the community supports them in managing their complex and multiple conditions, and understand what services they are entitled to. We are a tight-knit community and thanks to your support, we hope to grow to become a ‘one-stop shop’ for everything related to genetic bleeding disorders. We also lobby for the best possible treatment and care to be available for our community across the UK. We don’t receive any government funding and serve a community that is largely invisible to the public eye. Every year, we have to raise around a million pounds from scratch to ensure that we are there for the community when it needs us. As bleeding disorders are rare, many people will never encounter The Haemophilia Society. This means we have to work doubly hard to raise both awareness and understanding of bleeding disorders as well as the funds needed to give those affected the services they need and deserve. Your support will be hugely appreciated and will change lives of people who live with rare genetic bleeding disorders.