Monday 20 January 2020 - 09:00 am GMT
Today, the independent, family-run support group Local families with bleeding disorders (LFwBD), announce their entry into the official register of charities in England and Wales.
This major milestone in the group's history acknowledges the importance of creating space for families to meet face-to-face to share experiences, offer understanding and support, and mutually supportive opportunities for our children in an environment where they don't feel different. Bleeding disorders are typically rare in nature and a diagnosis is often an isolating experience. Day to-day, families rarely come into contact with others affected, but LFwBD offers support in a unique format, by bringing families together in a community of shared experiences.
Lisa Steadman, Group Trustee for LFwBD said: "What we do is to help families build connections, remove the feelings of stigma and isolation to create positive, supportive communities, where families help each other. Our entry into the official charity register is recognition of all our hard work and means we can further raise awareness of bleeding disorders. It will also give a real boost to our fundraising efforts, enabling us to continue putting on the fantastic social events that bring affected families together and the educational services that we offer members, by encouraging our families to support other families. Our core purpose is to offer "support for families, by families" as that is the type of informal, empathetic support our families need and want to reduce those feelings of isolation our parents, carers and children often feel."
In 2019, their first year of being established, LFwBD held a conference and webinar for families with children starting nursery and primary school to share experiences and advice, hosted a trip to London Zoo for over 20 families and, organized a wellbeing and self-care seminar for mums with mindfulness and Tai Chi techniques included.
One member who came along to our trip to London zoo said: "It's such a wonderful thing for the children and parents alike to have contact with someone else who understands what life with a bleeding disorder is like."
In 2020, the group plans to host another self-care and wellbeing seminar for Mums, family events including bowling, laser tag and a summer picnic and, a residential weekend, where children can try new family activities to build their confidence, resilience and self-esteem.
In addition, the group create community-led educational materials such as fact sheets, webinars, and sharing patient stories, via their website - including real-life experiences, tips and tools to manage day-to-day life, as well as major and minor life events.
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Media contact: For more information contact Lisa Miller/Steadman at
Notes to Editors:
About bleeding disorders
Bleedings disorders are mostly genetic, lifelong, inherited conditions that can be transferred from either parent to their child (although around 30% of cases as totally spontaneous with no previous family history).
The most well-known forms are haemophilia A which affects 1 in 5000 people in the UK, haemophilia B which affects 1 in 20,000 people in the UK, and von Willebrand disease (vWD) which affects around 1% of the UK population. Various forms of severity exist with each form ranging from severe, where the patient is completely missing one of their 13 clotting factors, to mild, where they might only have a level of around 8-9 ("normal" levels are between 50-200).
Missing just one clotting factor means that when you cut, bump or hurt yourself, or fall over, you bleed for longer - not faster - just longer. For these people, the blood doesn't clot until they have an injection of the missing clotting factor. Bleeds can also happen spontaneously (without injury), typically into ankle and knee joints, which can cause lasting damage to that joint.
Clotting factor injections are often given every other day but for some, more or less often - even daily. Administered via an inserted port or directly into the veins, parents learn very early on how to inject their children so they can treat at home. The children then learn to administer their own intravenous injections from around the age of 9-10 years. Life with a bleeding disorder can be very disruptive. Regular treatment, hospital visits, bleeds, hospital stays, consultants, physios, specialist dental care. It can also be very isolating. With such a rare condition, families hardly ever come across another family via their usual day-to-day life with shared experiences.
About Local families with bleeding disorders
Local families with bleeding disorders is a charitable group that has been created to promote social inclusion among children with bleeding disorders and their parents, carers, siblings and other family members who offer them support. Through shared experiences and activities, and awareness-raising initiatives, Local families with bleeding disorders works tirelessly to ensure people with bleeding disorders are not excluded from society, not made to feel different, not isolated in dealing and coping with their condition and not misunderstood as a result of their bleeding disorder.
As a small charity, the group's core focus is in providing face-to-face connections through social events, to build a strong and supportive community of families. Whether you are a parent, a patient, a sibling or other family member, the group aims to ensure you always have access to the support, advice and connections you need day-to-day.
The three core goals of the group are to:
1. Signpost to medical information in addition to providing directly education and information in an informal, empathetic and understanding way to support and enable parents to maximise social inclusion opportunities for their children
2. Raise public awareness of the issues affecting children living with bleeding disorders and their families
3. Provide workshops and seminars along with informal networking via our social media groups and social events that offer support, comfort, guidance and understanding to promote emotional wellbeing
The group is entirely funded through charitable donations. To find out more or make a donation, please contact us via our website www.bleeding-disorders.co.uk/donate.php or through our social channels on Facebook, Instagram and LinkedIN
Local families with bleeding disorders is a registered charity in England and Wales (1186979).
Local families with bleeding disorders disclaimer
The information contained in this release is correct as of Monday 20th January 2020. Information contained in this press release on behalf of Local families with bleeding disorders does not represent medical guidance. Always consult your clinical care team for medical advice and support.