Local families with bleeding disorders

  • 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.

  • Celebrating the Courage of Children Living with Bleeding Disorders

    As the Chair of Local families with bleeding disorders, I am continually inspired by the incredible bravery of children living with bleeding disorders such as haemophilia and von Willebrand disease. They face daily challenges with a strength and resilience that is truly remarkable.

    As we all know, managing a bleeding disorder often involves complex and demanding treatments, from regular infusions to advanced therapies, all aimed at preventing bleeds. For children, this can mean enduring frequent intravenous injections from their healthcare team or, even learning to manage their own treatment from a young age. Their ability to adapt and take ownership of these treatments is nothing short of extraordinary.

    Unexpected bleeds can bring pain and hospital visits, disrupting their routines and social lives.  These children also navigate the emotional challenges of living with a chronic condition.  Despite these challenges, they show remarkable resilience. Whether they’re undergoing treatment, participating in physiotherapy, or recovering from a joint bleed, they face obstacles with determination and courage.

    At Local families with bleeding disorders, we are proud to support not only these children but importantly their wider families whether that be parents attending appointments and helping with treatment, siblings comforting them when they are struggling with bleeds or treatment or grandparents who offer emotional support for all. 

    Through our events, we witness their incredible strength, the bonds they form, and the hope they inspire.  Through our bravery awards we recognise our heroes that face challenges and difficult times and yet do their best at all times to find a way through.

    To every child living with a bleeding disorder, you are an inspiration. Your bravery reminds us that courage is not the absence of fear but the determination to persevere. We celebrate you and commit to standing beside you every step of the way.  If you have a little hero in your family, please contact us for a special bravery award.

  • New Website!

    Please bear with us whilst we create our new site, all our resources and information will be back online asap. Thank you.