Local families with bleeding disorders

  • Reflections on Our Strategy Day & AGM

    By Lisa Steadman, Chair of Local Families with Bleeding Disorders

    Last weekend, we held our Annual Strategy Day and AGM.  This is the onetime of the year the committee come together, in person, without being at an actual event.  It is a really important time for us to spend together and support one another in our various roles within the charity.  

    I wanted to take a moment to say a huge thank you to all our wonderful committee members and trustees. Everyone involved gives their time as volunteers.  I’m constantly inspired by the passion and dedication each of them bring to our charity.  So much of the really important work that we do happens behind the scenes, and it doesn’t go unnoticed.

    During the day, we spent time reflecting on everything we’ve achieved over the past year—and there’s a lot to be proud of. We also looked ahead, making exciting plans for how we’ll continue to grow and support our members in the year to come.  We have several events planned and some ideas for fundraising to ensure we can continue to support our members. 

    A special highlight was welcoming our new admin manager, who we’re thrilled to have on board. With their help, we’re confident we can build even stronger foundations and focus even more on what matters most: supporting families living with bleeding disorders.

    We’re always open to new ideas and voices—so if you’re a member with thoughts, suggestions, or a desire to get more involved, please don’t hesitate to get in touch at info@bleeding-disorders.co.uk. 

    Thank you again to everyone who helps make this community so special.

  • A Mentor’s Guidance in Challenging Times

    When I founded Local Families with Bleeding Disorders in 2019, I was driven by a passion to support those in my community who, like me, understood the challenges of living with a bleeding disorder. However, despite my determination, I had no prior experience in running a charity. The responsibility was overwhelming, and I quickly realised I needed guidance to navigate the complexities of establishing and leading an organisation.

    That’s when I discovered the mentor scheme run by Findacure (now Beacon for Rare Diseases). I applied, hoping to find someone who could provide insight and support. I was incredibly  fortunate and was paired with the remarkable Jenny Ousbey of Ovid Health—a leader with deep expertise in healthcare communications and advocacy.

    Our mentorship was set to begin with an in-person meeting with other mentors and mentees, but fate had other plans. Just a week before we were due to meet, the world changed as we entered lockdown amid the COVID-19 pandemic. Instead of sitting across from each other at the planned workshop, we adapted and met online. Despite the physical distance (both London based but not allowed to meet in person), Jenny’s mentorship was just as impactful as if we had been in the same room.

    She provided invaluable advice that helped me prioritise what truly mattered in establishing the charity. Her guidance gave me clarity and confidence at a time when everything felt uncertain. Jenny’s support helped me navigate challenges that initially seemed insurmountable, and for that, I will always be grateful.

    I also want to extend my heartfelt thanks to Beacon for Rare Diseases for their incredible mentor scheme. It was a lifeline during a time of uncertainty, and I wholeheartedly encourage others in similar situations to seek support through their program.

    Thank you, Jenny, for your time, wisdom, and generosity. Your mentorship has had a lasting impact, not just on me, but on the families our charity serves every day.

  • The Power of Shared Stories: Supporting Families with Bleeding Disorders

    Living with a bleeding disorder can be challenging, but no family should have to navigate it alone. At Local Families with Bleeding Disorders, we see firsthand how much of a difference it makes when families share their experiences. By opening up about their journeys, families help others understand the realities of these conditions and offer invaluable support to those who are newly diagnosed or struggling to adjust.

    One of the most powerful ways to break down misconceptions and create a sense of community is through storytelling. When families speak about the daily realities of managing conditions like haemophilia or von Willebrand disease, they not only raise awareness but also empower others to face their own challenges with greater confidence. These personal accounts provide comfort, practical advice, and the reassurance that no one is alone in this journey.

    The recent article by Haemnet’s Kathryn Jenner on severe haemophilia A (Haemnet Blog) is a great example of how storytelling can make a difference. Kathryn has worked extensively with families to bring their experiences to light, and we are incredibly grateful for her expertise. Her ability to capture and share these voices ensures that more people understand the impact of bleeding disorders beyond the medical perspective.

    To all the families who have shared their stories—thank you. Your courage and openness help create a supportive and informed community where no one feels isolated. By continuing to speak up, you are making a real difference in the lives of others facing similar challenges.

    If you are willing to share your story, please reach out. Together, we can ensure that every family living with a bleeding disorder feels heard, supported, and empowered.

  • 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.

  • 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.