Local families with bleeding disorders

  • 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

  • World Haemophilia Day: Recognising Resilience, Raising Voices

    April 17th marks World Haemophilia Day — a time to reflect, raise awareness, and stand united with everyone affected by haemophilia and other bleeding disorders. As Chair of Local Families with Bleeding Disorders (LFWBD), I know firsthand how vital it is to acknowledge the varied experiences of individuals and families living with these lifelong conditions — across generations and around the globe.

    This year’s theme, “Women and Girls Bleed Too,” confronts a long-overlooked truth: too many women live with undiagnosed or misdiagnosed bleeding disorders. Their symptoms are often dismissed, misunderstood, or minimised. Today is a day to shine a light on their stories and push for greater recognition, earlier diagnosis, and equitable care.  

    Living with a bleeding disorder isn’t easy — it takes resilience, adaptability, and constant vigilance. From managing daily routines to navigating emergencies, the impact is felt across every aspect of life. And yet, within our community, there is so much strength. At LFWBD, we are proud to support our members — not just today, but every day.

    We also pause to thank the dedicated medical professionals who work tirelessly to support patients and families. Your expertise, empathy, and commitment are paramount to being able to live the best life we can with bleeding disorders.

    Today is a day for visibility, for advocacy, and for solidarity. To everyone living with a bleeding disorder — especially the women and girls whose voices are finally being heard — we see you, we stand with you, and we will continue to fight for better awareness and better care.

  • 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 one time 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.