Local families with bleeding disorders

  • A Big Thank You to Our Committee and Trustees

    As Chair of Local Families with Bleeding Disorders (LFWBD), I want to say a huge thank you to our incredible committee members and trustees who gave up their Sunday to attend our AGM and annual strategy day.

    It was so valuable to all be together in person — something we rarely get the chance to do outside of our events. Having that dedicated time and space to talk, reflect and plan really helps us to come together as a team and make sure we have a clear path forwards for the year ahead.

    We spent time looking back on the past year and celebrating everything we’ve achieved together. It really has been a record breaking year.  Three grants secured, a poetry book created and shared widely, a children’s illustrated book about our superhero’s adventures, the launch of our first podcast in collaboration with Haemnet, numerous family blogs published also with Haemnet, attendance at the parliament event for rare disease day and the HNA conference for the first time ever and all whilst growing our membership and delivering a wide range of well attended events.  It really has been  year we can be proud.

    Just as importantly, we looked ahead. With lots of great ideas and discussion, we’ve put together an exciting events calendar for the year ahead, ensuring we continue to support our families in meaningful and engaging ways.

    None of this would be possible without the time, dedication and care that our trustees and committee members give throughout the year. Everything they do is on a voluntary basis, and their commitment is what keeps LFWBD thriving.

    If you’re interested in getting involved and joining our team, we’d love to hear from you. Together, we can continue to build something really special for our community.

  • Connecting with Our Community at the HNA Conference

    Sandra, one of our trustees, and I had the pleasure of attending the Haemophilia Nurses Association (HNA) Conference at Aston University and Conference Centre in Birmingham. It was a fantastic opportunity to meet and connect with haemophilia nurses from across the country — the true backbone of our community.

    These dedicated professionals support families every day, often forming some of the most important and trusted relationships in the lives of those living with bleeding disorders. It was wonderful to have the chance to speak with so many of them, share the work we are doing at Local Families with Bleeding Disorders (LFWBD), and spread the word about the support network we have created for families.

    We were also delighted to share copies of our newly launched book, Down to Earth with a Bump, which sparked lots of interest and great conversations. Alongside this, we shared links to our new poetry book, another project created by our members to express the lived experiences of families affected by bleeding disorders.

    We provided information packs for nurses to take back to their centres, including our parent-written factsheets on travel, starting school, and hospital stays — practical resources designed to support families through some of the moments that can feel most challenging.

    It was also great to meet representatives from a number of pharmaceutical companies, many of whom were very interested in the work we are doing to bring families together, provide peer support, and create opportunities for connection beyond clinical care.

    A big thank you to Marie Eales, Chair of the HNA, for inviting us and making us feel so welcome. It was a hugely positive and productive day, and we hope to be back again next year.

  • Bleeding and Belonging – Finding Our Voices Through Poetry

    At Local Families with Bleeding Disorders (LFWBD) we are always looking for new ways to support our members and help them feel connected. While our community often comes together through social events, last year we had the opportunity to explore something different through our poetry project, Bleeding and Belonging.

    Seven members of our LFWBD community took part in a series of online workshops led by the wonderful poetry facilitator Dawn Gorman. The project was made possible thanks to funding secured by Dr Rich Gorman from Brighton Medical School, through the University of Brighton’s Centre for Arts and Wellbeing. Over six weeks, we met online to write poems around central themes connected to living with a bleeding disorder. Between sessions, participants worked with Dawn to refine and develop their poems, helping each of us shape our thoughts and emotions into something meaningful and authentic.

    All the participants live with their own bleeding disorder and most care for a child with one. The workshops provided a safe and supportive space to explore feelings that can sometimes be difficult to express. Poetry offered a powerful and creative way to share experiences, reflect on the challenges and joys of family life, and connect with others who truly understand.

    The impact of this project was recently highlighted in the Haemcast podcast, produced with Haemnet, where we spoke about the importance of creating spaces where families can share their stories and feel heard.  You can listen to the podcast here https://loom.ly/d6YUipg

    We are incredibly proud of everyone who took part. Their voices, honesty and creativity have created something truly special.

    You can read the digital poetry collection Bleeding and Belonging here: https://issuu.com/b-s-m-s/docs/bleeding_and_belonging?fr=xKAE9_zU1NQ

  • Celebrating the Launch of Down to Earth with a Bump

    We’re incredibly proud to share the launch of our new book, Down to Earth with a Bump.  This book was created by and for, our LFWBD community.

    At the heart of the book, is our very own bleeding disorders superhero, B/D, a character designed by one of our young members (Dylan) some time ago now.  We also ran a spaceship design competition and we are so excited that Lily’s winning design has been specially illustrated throughout the book.  The other entries are shown at the back of the book.  Seeing these creative projects come to life has been a real highlight for us all.

    We love that our story centres around space as we felt that it reinforces the idea that living with a bleeding disorder doesn’t stop you reaching for the stars. 

    The illustrations throughout the book were created by one of our talented members (Natalie Stead).  They bring warmth, humour and personality to every page. The story itself was written collaboratively by members of the LFWBD committee.

    Down to Earth with a Bump is more than just a book. It’s a celebration of the lived experience, creativity and collaboration. It shows what’s possible when we create space for members to share their ideas and talents in new ways.

    We’re so proud of everyone involved in bringing this project to life, and we hope families enjoy reading it as much as we enjoyed creating it together.

    You can buy your copy here https://shop.ingramspark.com/b/084?params=d2JTCLBZlwy9XijoUgtOz3j7PnV50CRfejgSUfJDj8A which will also see a donation of £2 made to LFWBD for every book sold.

  • Marking Rare Disease Day at Parliament – A Powerful Day of Voice and Advocacy

    As Chair of Local Families with Bleeding Disorders (LFWBD), I was joined by Sandra, one of our Trustees at the Rare Disease Day 2026 event at Parliament earlier this week. Rare Disease Day is an important annual moment when charities, families, policymakers and advocates come together to raise awareness of rare conditions and push for fairer, more equitable care for all. The campaign this year, led by Genetic Alliance UK, focused on the theme of equity for rare conditions — advocating that people should receive support tailored to their needs, not just a standard “one-size-fits-all” approach to healthcare and support.

    Being at such a significant event was both inspiring and humbling. We enjoyed networking with representatives from Genetic Alliance UK, meeting leaders from other small charities and, those with rare diseases themselves, all working tirelessly to improve the lives of people affected by rare conditions. Hearing first-hand from families and organisations who share our goals reminded us of the collective strength within the rare disease community, and why this day matters so much.

    Rare Disease Day isn’t just about awareness — it’s about connection, advocacy and action.  We left Parliament energised, connected and more determined than ever to continue LFWBD’s mission of support, understanding and community.

  • A Brilliant Day at the Science Museum

    As Chair of Local Families with Bleeding Disorders (LFWBD), it was so lovely to see our families come together recently for a fantastic day out at the Science Museum in London. From the moment we arrived, there was a real buzz of excitement as children and adults alike explored the exhibits, chatted among themselves and got hands-on in the Wonderlab.

    One of the highlights of the day was simply being together. Sharing lunch gave everyone the chance to slow down, chat, and connect — catching up with old friends and welcoming new families into our community. These moments matter. They help build the networks and friendships that make living with a bleeding disorder feel less isolating.  And it is what we, at LFWBD are all about.  We organise these events but, it is the people that come to them that really make them happen.

    The importance of sharing stories with people who truly “get it” was not only apparent on the day but also, reflected so clearly in the feedback we received afterwards. One family told us: “Our daughter had the best time and hasn’t stopped talking about it. Being reunited with her friend was her favourite part — two brave little girls showing everyone that you can still enjoy yourself even when living with a bleeding disorder.” Others shared how wonderful it was to reconnect with familiar faces, meet new ones, and even discover families living right on their doorstep.

    These comments remind us exactly why we do this. It really inspires our committee and motivates us to continue to put on events like this. 

    A huge thank you to Marie, who organised the day and, as always, did a fantastic job. We’re already looking forward to the next adventure together.

  • All Aboard for a Magical Evening

    Our London Christmas Lights Bus Tour

    This weekend, we kicked off the festive season in true Local families with bleeding disorders style with our annual London Christmas Lights Bus Tour and what a night it was! The Routemaster was packed full of excited families, old friends and new faces, all ready to soak up the sights and sounds of Christmas in the capital.

    As we pulled up to Oxford Street, we were met with a truly magical moment, Father Christmas himself was waiting at the bus stop! With his trademark “ho ho ho!”, he jumped aboard, leading the bus in festive songs, listening to stories of how good the children had been all year, and giving out gifts to every child. His presence lit up the bus almost as much as the sparkling lights of London!

    The lights were, as always, spectacular – Oxford Street, Bond Street, Piccadilly Circus, Trafalgar Square and even a few key sights like Big ben and The London eye.  But, what made the evening so special was the warmth and connection on board. Seeing our community come together, chat, laugh and celebrate was a reminder of just how far we’ve come.

    We are incredibly proud of the supportive, kind, and caring network we’ve built through our charity. Events like this show the power of community, how shared experiences, fun, and friendship can make such a difference.

    A massive thank you to the National Lottery Community Fund for supporting this event, and to the one and only Mark Salmen, whose incredible fundraising efforts helped make it all possible.  Also to Anna and Marie who take the lead on the organisation of this event and somehow manage to buy all the gifts and get them into central London!

    We all stepped off the bus full of festive cheer and proud to be part of something so special.

    Happy Christmas everyone!

    #NationalLottery

  • Shining a Light on Partners

    Reflections from Our Latest Podcast

    As Chair of Local Families with Bleeding Disorders (LFWBD), I’m always
    learning more about the different ways bleeding disorders impact not
    just individuals, but entire families.

    We recently recorded a podcast with Haemnet exploring the role,
    experience, and importance of partners who support someone living with
    a bleeding disorder. It was a powerful and thought-provoking
    conversation that really stayed with me.

    What stood out was how deeply partners are affected emotionally,
    practically, and often quietly. They play a huge role in supporting
    their loved ones, and yet they’re rarely the focus of support
    themselves. They bring a unique perspective and experience, one that
    often involves juggling care and advocating for someone they love,
    while trying to process their own worries and fears.

    This podcast made it clear: we need to do more to support partners.
    While our events and community work are often focused on families and
    children, there’s a space here for something more tailored; a safe,
    supportive place just for partners to share, reflect, and connect.

    We’d love to hear your ideas. What kind of support would make a
    difference? A group meet-up? A dedicated workshop? An online chat?
    More podcast episodes featuring partners’ voices?

    If you’re a partner, or know someone who is, and have thoughts or
    suggestions please get in touch. We’re listening.

    This podcast was just the start of the conversation, and we’re
    committed to continuing it. Because support should reach everyone –
    not just the person with the diagnosis.

  • Trustees’ Week –Celebrating the Team Behind LFWBD

    As Chair of Local Families with Bleeding Disorders (LFWBD), I’m proud to mark Trustees’ Week by celebrating the incredible work of our trustee team.

    Trustees’ Week is about recognising the dedication, commitment, and collaboration that go into ensuring a charity not only survives, but thrives. Behind every fun family day, every picnic, every day out or Christmas lights tour, there’s a small but hardworking team making sure everything we do is safe, sustainable, and effective.  This includes not only our Trustees, but very much our committee members too.

    Being a trustee isn’t just about helping to organise events — although that’s a big part of what makes LFWBD so special. It’s also about making sure we comply with important financial and legal responsibilities, and working together to shape the strategic direction of the charity. It takes shared passion, a mix of experience, and a lot of behind-the-scenes effort.

    Trustees come to the role for different reasons, often shaped by personal experiences or the experience they have to offer that will help make a difference in building a stronger charity. What we share is a belief in the value of community, connection, and making a difference to families living with bleeding disorders.

    I’d like to take this opportunity to thank Sarah and Sandra, my fellow trustees, for everything they do. Your time, energy, knowledge and care have helped shape LFWBD into the supportive, trusted charity it is today.

    Together, we’ve built something meaningful — a place where families can find not only support, but also friendship. And that’s something to be incredibly proud of.

    Happy Trustees’ Week to all those who give their time to lead with heart.

  • A Fantastic Day Out at Hobbledown Farm

    We had an absolutely brilliant day out at Hobbledown Farm in Epsom with our amazing Local Families with Bleeding Disorders community! A huge thank you to everyone who came along.

    The farm is a great venue to bring our families together with children of all ages.  Families were able to explore everything from animals and play areas to the fantastic indoor spaces. For many of our children, it was a day of new experiences — climbing, feeding animals and running free in a safe and supportive environment.

    As always, one of the highlights is lunch together.  This is for many of us, a rare chance for families to sit, chat, and connect. The tipi provided a great venue for this.  These shared moments can be just as meaningful as the activities themselves. It is always so heartwarming to see new friendships forming, children finding playmates who understand their world, and parents sharing stories and support.

    We’d like to say a huge and very special thank you to Anna, Marie, and Steph especially for organising the day.  Your time, effort, and care meant everything ran so smoothly. These events don’t just happen.  They are made possible by the hard work and attention to detail of our volunteers.  Without them giving their time, these events simply would not be possible or affordable.  Similarly, without the fundraising efforts of our community, we would not be able to host such events.

    At LFWBD, we believe that these social events are about more than just a day out. They are about building a community, breaking down isolation, and showing our children (and ourselves) that we’re not alone.

    We can’t wait for the next event – our annual Christmas lights bus tour on a traditional Routemaster bus.  We hope to see even more of you there. Saturday 6th December – bus leaves at 4pm.

    Thank you again to everyone who came and made the day so memorable!