Local families with bleeding disorders

  • Service of Recognition, Remembrance and Reflection at St Paul’s Cathedral

    On 19th May 2026, members of the Local Families with Bleeding Disorders (LFWBD) community attended the deeply moving Service of Recognition, Remembrance and Reflection at St Paul’s Cathedral in London.

    Hundreds of people gathered together to remember and honour all those affected by the infected blood tragedy, a tragedy that has had a devastating and lasting impact on so many within the bleeding disorders community and their families.

    The service was thoughtful, emotional and incredibly powerful. There were moments of sadness and reflection, but also moments of compassion and recognition. Hearing Michael Ball sing within the magnificent setting of St Paul’s Cathedral added to the emotion and significance of the occasion.

    Another particularly moving moment came when the cathedral fell completely silent as thousands of campaign-coloured petals were released from the Whispering Gallery above, gently falling through the cathedral in memory of all those we have lost over the many decades since this tragedy first unfolded. It was a beautiful and heartbreaking tribute that will stay with many of us for a very long time.

    We were also each given the name of someone who wanted to be remembered and aske to read out their names in unison and ask that they be remembered.  Such a touching action to be part of.

    A number of political figures attended the service, including Prime Minister Keir Starmer, Theresa May, and Diana Johnson, alongside many others who have supported the fight for truth, justice and recognition for those affected, as well as many members of the Inquiry team including Sir Brian Langstaff who gave yet another poignant speech about just how unimaginable and unforgiveable this tragedy is and has been for so long.

    A special mention must go to Clive Smith, Chair of the Memorial Committee, who did a truly outstanding job in helping shape such a sensitive and inclusive event. The care, thoughtfulness and compassion shown throughout the service were evident in every detail.

    Our thoughts remain with everyone affected, both within our own community and across the wider bleeding disorders community.

  • A Special Afternoon Tea to Say Thank You

    This weekend, we had the pleasure of hosting a very special afternoon tea at the Covent Garden Hotel in London to say thank you to the incredible nurses who support our families.

    At Local Families with Bleeding Disorders (LFWBD), it is really important to us to hold space where we can recognise the care, dedication and kindness these nurses show every day. They are often the first point of contact for families, providing not only medical expertise but also reassurance, guidance and understanding during some of the most challenging moments.  They become another family member to many of us, and I know from personal experience, bring much needed support and comfort at difficult times.

    Our nurses are a vital part of our community, and the support they provide extends far beyond treatment. They help families feel informed, confident and cared for — something that makes a real difference.

    The afternoon was a chance to step away from the hospitals and come together. It was so nice to spend time chatting and saying thank you in person. 

    We are so grateful to each and every one of them. Thank you for everything you do — this afternoon was just a small way of showing how much you are appreciated.

  • World Haemophilia Day 2026 – Diagnosis: The First Step to Care

    As Chair of Local Families with Bleeding Disorders (LFWBD), World Haemophilia Day is always an important moment to pause, reflect, and come together as a community. This year’s theme, “Diagnosis: The First Step to Care,” set by the World Federation of Hemophilia (WFH), highlights something fundamental — that without diagnosis, access to treatment, support and understanding simply cannot begin.

    The WFH reminds us that more than three-quarters of people with haemophilia worldwide remain undiagnosed, with an even greater gap for other bleeding disorders. This means hundreds of thousands of individuals are still living without access to even the most basic care. It’s a powerful and sad  reminder of how much more needs to be done globally.

    Here in the UK, we are fortunate to have access to high standards of care and treatment. But today, we are encouraged to reflect on those who came before us, when diagnosis and treatment were far more limited, and to think of families around the world who still face those challenges today.

    At LFWBD, we see every day the difference that diagnosis and support can make — not just medically, but emotionally and socially too. World Haemophilia Day is also about connection: bringing people together, sharing experiences, and supporting one another, just as we aim to do within our own community.

    Today, we stand in together with families across the world, recognising how far we’ve come, while acknowledging how far there is still to go.

    Together, we hope to move closer to a future where diagnosis — and care — is truly available to all.

  • New Haemcast Episode –Real Conversations from our  Community

    We’re delighted to share the latest episode of Haemcast, created in collaboration with Haemnet and some of our wonderful LFWBD families.

    This second episode, titled “Sticky blood, teddies and teens,” features parents Hannah, Mark and Jackie, who speak openly and honestly about how they talk to their children about their bleeding disorder. From explaining where it comes from, to helping children understand what it means for their daily lives and why treatment is so important, the conversation is both insightful and incredibly relatable.

    These are the kinds of discussions that don’t always happen easily. Knowing what to say, when to say it, and how much to share can feel overwhelming for many families. What makes this episode so powerful is the honesty and reassurance it offers — hearing from other parents who truly understand can make all the difference.

    At Local Families with Bleeding Disorders (LFWBD), creating spaces where families can share experiences and support one another is at the heart of what we do. This podcast is another brilliant example of how those conversations can reach even more people, helping families feel less alone and more confident in navigating everyday life.

    A huge thank you to Haemnet and to Hannah, Mark and Jackie for sharing their experiences so openly.

    You can listen to the episode here: https://loom.ly/_Pr-GBk

    Or search “Haemcast” on your favourite podcast platform.

    We hope you enjoy listening as much as we did.

  • 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.