Local families with bleeding disorders

  • Summer Picnic in Kensington Gardens

    Our annual LFWBD Summer Picnic in Kensington Gardens was a wonderful reminder of just how important our community is.

    We were delighted to welcome both familiar faces and new families joining us for the first time. It was lovely to see everyone relaxing together on a beautiful sunny day, enjoying picnics, playing games and spending time with others who truly understand the realities of living with a bleeding disorder.

    One of the highlights of the day was our circus skills workshop. Our talented circus instructor had children and adults alike trying their hand at a range of new skills, bringing plenty of laughter, encouragement and a little friendly competition along the way. It was fantastic to see so many people getting involved and having fun together.

    Perhaps the most special part of the day, however, was the opportunity to connect. There is something incredibly valuable about being amongst people who simply “get it” – sharing experiences, swapping stories and knowing you do not need to explain every detail because others understand exactly what you mean.

    As an added bonus, we even caught a flypast from Trooping the Colour overhead, making an already memorable day feel even more special.

    Thank you to everyone who came along and helped make the day such a success. We look forward to seeing you again at our next LFWBD event.

  • Thank you!

    As Chair of Local Families with Bleeding Disorders (LFWBD), I want to say a huge thank you to the wonderful members of our community who have recently taken part in the fantastic Haemcast podcast series.

    Sharing personal experiences can be incredibly difficult, particularly when those experiences involve the challenges, worries and emotions that can come with living with a bleeding disorder or caring for someone who does. That’s why we are so grateful to the families who have spoken so openly, honestly and bravely for the benefit of others.

    At LFWBD, this is exactly what we are all about — sharing stories, building support, creating community, and helping people feel understood. There is something incredibly powerful about hearing someone say the things you’ve thought or felt yourself. It reminds people that they are not alone.

    The recent podcasts have explored family life, treatment, parenting, emotions, and everyday experiences in such a real and relatable way. They have highlighted the empathy, kindness and understanding that exists within our community and shown how much we can learn from one another when we create safe spaces to talk openly.

    We have been incredibly proud to collaborate with Haemnet on these episodes and are so thankful to everyone who has contributed their time, honesty and experiences.

    If you haven’t listened yet, we would really encourage you to look up Haemcast on your favourite podcast platform. There have been some brilliant episodes recently – always expertly hosted by the lovely Kathryn Jenner, and we hope they continue to help families feel connected, informed and supported.

  • 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.