Category: Uncategorized

  • 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.

  • 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.

  • 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.

  • Reflections on Our Strategy Day & AGM

    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.