Local families with bleeding disorders

  • 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!

  • We Did It! LFWBD Wins National Lottery Funding

    We are absolutely thrilled to share some incredible news, Local Families with Bleeding Disorders has been awarded a grant from the National Lottery Community Fund! This is the first major grant we’ve ever applied for, and to have been successful is a huge moment for our charity.

    This funding is a game-changer for us. It means that over the next few years, we can continue to run the much-loved events that bring our community together from summer picnics to festive celebrations, fun days out and more. These events are the heart of what we do, giving families the chance to connect, support each other, and have fun in a safe and understanding environment.

    The grant will also help us cover essential running costs – the behind-the-scenes things that keep everything going smoothly. This support brings us long-term stability and helps us plan ahead with confidence.

    A huge thank you goes to our brilliant trustee Sandra, who led the grant application process with such care and dedication. It was truly a team effort, with all of our trustees and committee members contributing ideas and energy to bring the vision to life.

    And of course, an enormous thank you to the National Lottery and all its players your support will make a real, lasting difference to the lives of families living with bleeding disorders.

    We can’t wait to get started on the exciting years ahead. Watch this space!

    #NationalLottery.

  • Finding Our Voice Through Poetry: A Creative Journey with Local Families with Bleeding Disorders

    As Chair of Local Families with Bleeding Disorders, I’m thrilled to share the powerful experience we recently had through a unique poetry course. This initiative brought together individuals living with bleeding disorders to explore their thoughts, feelings, and experiences through the power of creative writing.

    This project was largely thanks to Dr. Rich Gorman, Senior Research Fellow at Brighton Medical School, who successfully secured funding for this project. Rich is a passionate advocate for using creative writing to give voice to lived experiences, and we are deeply grateful for his support.

    The course was led by Dawn Gorman (no relation to Rich!), an award-winning poet, arts practitioner, and journalist. Dawn skillfully guided us through the art of poetry, teaching techniques that helped us unlock deeply personal and emotional stories.

    Under Dawn’s expert mentorship, we created some truly moving and powerful poems. The sessions were not only creative but deeply therapeutic. At times, we confronted challenging and painful memories, but the safe and supportive environment helped us navigate those emotions together.

    This course has been a journey of connection, courage, and creativity. It was an honour to work with such a wonderful group of ladies, each bringing their own voice and strength to the process.

    We hope to publish our poetry later this year and share our journey through an episode of the Haemnet podcast.

    This has been an unforgettable and empowering experience that we shall treasure.

  • Celebrating Mark Salmen – A True LFWBD Hero

    As Chair of Local Families with Bleeding Disorders (LFWBD), I want to take a moment to celebrate one of our longest-standing members – Mark Salmen. Mark, along with his wife and two sons, has been with us since the charity began six years ago. Their journey has included major challenges, from an unexpected diagnosis to navigating needle phobia – and through it all, they have shown extraordinary strength and resilience.

    We’ve been proud to support them during the toughest times, and in return, they have become a huge inspiration to our community. Most recently, Mark took on the London to Brighton Bike Ride and raised over £1,000 for LFWBD.

    Mark, we think you’re amazing. Without people like you, we couldn’t run the events that bring our families together. Thank you for your dedication, generosity, and spirit. We are so lucky to have you in our LFWBD family. Well done!

  • Summer Picnic Magic at Kensington Palace Gardens

    As Chair of Local Families with Bleeding Disorders, I’m delighted to share the joy of our annual Summer Picnic, held this year in the beautiful Kensington Palace Gardens. It was a day full of laughter, sunshine, and community spirit.

    A highlight of the day was our fantastic circus skills instructor, who had children (and adults!) juggling, balancing, and trying things they never thought they could do. It was wonderful to see everyone pushing themselves a little and having so much fun in the process.

    What truly makes this event special is our families. Being together, sharing experiences, and supporting one another is at the heart of everything we do. Watching children make new friends – and realise they’re not the only ones living with a bleeding disorder – is incredibly powerful.

    Thank you to everyone who came along and made the day unforgettable. You make the magic happen.

  • Celebrating Our Volunteers – The Heart of LFWBD

    As Chair of Local Families with Bleeding Disorders, I want to take a moment during Volunteers’ Week this week to thank the incredible volunteers who keep our charity running.

    LFWBD simply wouldn’t exist without the time, energy, and dedication of our volunteer team. From organising events and supporting families, to managing finances, admin, communications, and everything in between, it’s our volunteers who make it all happen.

    Their work often goes unseen.  Organising and attending the events we run are a very important part of what we do but so much more goes on behind the scenes that could easy go unnoticed.   But this is the important work that needs to be done to ensure the charity remains on track, has a solid future and remains within the laws of the charities commission whilst also staying true to our constitution. They are also the friendly faces greeting families at our events to make sure everyone feels welcome and included.

    Their commitment ensures that families living with bleeding disorders have a safe, supportive space to connect, share experiences, and enjoy themselves. We are incredibly lucky to have such a passionate, ambitious, caring and generous team.

    So to each and every one of our volunteers – thank you. You bring our mission to life, and we are grateful always for everything you do. LFWBD wouldn’t be the same without you. You are truly the heart of our community.  And if you would like to join our team, please do drop us a line at info@bleeding-disorders.co.uk.

  • Thank You to Our Wonderful Nursing Team

    As Chair of our local bleeding disorders charity, I’m delighted to share a little update about a very special afternoon we recently enjoyed. On Saturday, we had the absolute pleasure of treating some of the amazing nurses who care for our families to a well-deserved afternoon tea in London. It was a lovely opportunity to relax, chat, and say a huge thank you for the incredible work they do.

    Our nurses are such an important part of our community. Their care, dedication, and compassion make a real difference every day in the lives of families living with bleeding disorders. It was wonderful to spend time together outside of the hospital setting, to laugh, share stories, and simply enjoy each other’s company.

    We also took the chance to thank them for the positive impact they have—not just medically, but emotionally and socially—on the families they support. We told them more about Local families with bleeding disorders and hope that they will continue to spread the word about our charity, encouraging families to join us for our fun days out and online support groups.

    Our charity exists to bring families together, reduce isolation, and help everyone feel supported and understood. Whether it’s through social events, information sharing, or just having someone to talk to, we’re here for every family.

    Thank you again to our incredible nurses. We’re already looking forward to the next time we can spend a little time together, away from the pressures of work. 

  • A visit to St George’s – A Great Day with the paediatric team and patients

    I had the pleasure of visiting St George’s Hospital recently to chat with patients and families about Local Families with Bleeding Disorders (LFWBD) and the work that we do in supporting families.
    It was a really enjoyable day – great to be invited, and wonderful to meet the families and staff. There was a relaxed atmosphere, and it was a brilliant chance to spread the word about what we’ve been up to at LFWBD and what’s coming up next.
    I spoke about some of the events we’ve held recently including our annual picnic, bowling, trips to the zoo, a visit to the Tower of London, Christmas bus rides and more. We’ve had some fantastic feedback from members who’ve told us how valuable these events are for staying connected and informed. We always have a lot of fun and enjoy spending time with others who understand our journeys. Our events are enjoyable and provide valuable opportunities for connection, support and friendship.
    It was also a good opportunity to let people know about what’s ahead – including our summer picnic with a circus skills entertainer which is always a hit. We warmly invite more families to join us, whether they have been newly diagnosed or have been navigating life with a bleeding disorder for years.
    Thanks again to the team at St George’s for having me – it was great to get out there, meet people, and share the exciting news and updates about the work we’re doing. If you’d like to know more or get involved, we’d love to hear from you! Please feel free to contact us at info@bleeding-disorders.co.uk