Category: Events

  • A visit to St George’s – A Great Day with the paediatric team and patients

    I had the pleasure of visiting St George’s Hospital recently to chat with patients and families about Local Families with Bleeding Disorders (LFWBD) and the work that we do in supporting families.
    It was a really enjoyable day – great to be invited, and wonderful to meet the families and staff. There was a relaxed atmosphere, and it was a brilliant chance to spread the word about what we’ve been up to at LFWBD and what’s coming up next.
    I spoke about some of the events we’ve held recently including our annual picnic, bowling, trips to the zoo, a visit to the Tower of London, Christmas bus rides and more. We’ve had some fantastic feedback from members who’ve told us how valuable these events are for staying connected and informed. We always have a lot of fun and enjoy spending time with others who understand our journeys. Our events are enjoyable and provide valuable opportunities for connection, support and friendship.
    It was also a good opportunity to let people know about what’s ahead – including our summer picnic with a circus skills entertainer which is always a hit. We warmly invite more families to join us, whether they have been newly diagnosed or have been navigating life with a bleeding disorder for years.
    Thanks again to the team at St George’s for having me – it was great to get out there, meet people, and share the exciting news and updates about the work we’re doing. If you’d like to know more or get involved, we’d love to hear from you! Please feel free to contact us at info@bleeding-disorders.co.uk

  • World Haemophilia Day: Recognising Resilience, Raising Voices

    World Haemophilia Day: Recognising Resilience, Raising Voices

    April 17th marks World Haemophilia Day — a time to reflect, raise awareness, and stand united with everyone affected by haemophilia and other bleeding disorders. As Chair of Local Families with Bleeding Disorders (LFWBD), I know firsthand how vital it is to acknowledge the varied experiences of individuals and families living with these lifelong conditions — across generations and around the globe.

    This year’s theme, “Women and Girls Bleed Too,” confronts a long-overlooked truth: too many women live with undiagnosed or misdiagnosed bleeding disorders. Their symptoms are often dismissed, misunderstood, or minimised. Today is a day to shine a light on their stories and push for greater recognition, earlier diagnosis, and equitable care.  

    Living with a bleeding disorder isn’t easy — it takes resilience, adaptability, and constant vigilance. From managing daily routines to navigating emergencies, the impact is felt across every aspect of life. And yet, within our community, there is so much strength. At LFWBD, we are proud to support our members — not just today, but every day.

    We also pause to thank the dedicated medical professionals who work tirelessly to support patients and families. Your expertise, empathy, and commitment are paramount to being able to live the best life we can with bleeding disorders.

    Today is a day for visibility, for advocacy, and for solidarity. To everyone living with a bleeding disorder — especially the women and girls whose voices are finally being heard — we see you, we stand with you, and we will continue to fight for better awareness and better care.

  • A Heartfelt Thank You to Our Dedicated Haemophilia Nurses

    At Local Families with Bleeding Disorders, we deeply appreciate the specialist haemophilia nurses who provide essential care and support. These professionals do more than administer treatments; they empower families, offer reassurance, and ensure that children with bleeding disorders can lead fulfilling lives.

    To show our gratitude, we have organised a special Afternoon Tea on Saturday, 10th May 2025, at the Charlotte Street Hotel in London. This event is a small token of thanks for their dedication and an opportunity to connect.

    Why Our Nurses Matter

    Haemophilia nurses are vital in educating families, managing treatments, and providing guidance. They go beyond clinical care, becoming trusted sources of support and advocacy. Their dedication makes a world of difference to our children’s wellbeing.

    An Event to Celebrate and Connect

    This gathering is more than a celebration—it’s an opportunity to strengthen our partnership with the nurses who care for our families. We hope they will feel confident directing families to our charity, ensuring more people benefit from our community, events, and resources.

    Local Families with Bleeding Disorders is committed to creating a supportive network for affected families. Our social events and support networks help families connect, learn, and find reassurance.

    Looking Ahead

    We hope this event will foster closer collaboration between our charity and healthcare professionals. Nurses play a key role in guiding families, and their support helps extend our reach.

    To all the haemophilia nurses—thank you. Your work is invaluable, and we are truly grateful for your dedication.

  • Local Families with Bleeding Disorders Marks a Joyful End to a Milestone Year

    As Chair of Local Families with Bleeding Disorders, I feel proud to reflect on the final event of a truly special year – our 5th birthday! This year has been filled with connection, joy, and community spirit, and our final event was a perfect celebration of everything we stand for.

    Bringing families together is at the heart of what we do. These events give our members the chance to step away from the challenges of managing a bleeding disorder and enjoy fun, laughter, and friendship. The benefits are clear: children play, parents connect, and lasting bonds are formed. Seeing old friends reunite and new friendships blossom reminds us of how powerful these events are.

    For the committee, there’s nothing more rewarding than witnessing these connections. While we work to facilitate these gatherings, it’s the incredible people who attend that make them truly special. Their warmth, resilience, and positivity create the vibrant community we’re so proud of.

    Our 5th birthday year has reminded us of how far we’ve come and why our work is so important. As we say goodbye to 2024, we are filled with gratitude for everyone who joined our events, supported our mission, and brought our community to life.

    We can’t wait to see what 2025 holds. More events, more connections, and more opportunities to come together as a community are on the horizon. Thank you for being part of our journey – here’s to another year of fun, friendship, and support!

  • Annual London Christmas Lights Bus Tour: A Festive Treat for Families

    As Chair of Local Families with Bleeding Disorders, I am thrilled to announce the return of our much-loved annual Christmas Lights Bus Tour this December! Now in its third year, this magical event has become a cherished tradition for families living with bleeding disorders.

    There’s nothing quite like seeing London’s iconic Christmas lights from a classic Routemaster bus. With the fabulous lights, festive music, and the warmth of community, the evening is a highlight of the Christmas season. But the true star of the night is Father Christmas himself, who joins us on the bus to bring joy to the children. His Christmas carols are not to be missed!  Watching the little ones’ faces light up as they receive their special gifts from Santa is something we all treasure.

    This event is so much more than a tour of the festive lights of London.  It’s about families coming together to share in the magic of the season. Children love the excitement of the big red bus, parents enjoy the chance to connect with others in the community, and the presence of Father Christmas makes it even more special for everyone.

    The tour has grown in popularity over the last two years.  We are so fortunate to be able to continue this wonderful tradition. We’re incredibly grateful to our volunteers and supporters who make it all possible.

    This annual event is a reminder of the strength and joy in our community, and we can’t wait to celebrate with you all again. Join us this December for an unforgettable afternoon filled with lights, laughter, and holiday cheer – and, of course, a visit from Father Christmas himself!

    See you there.