Category: Events

At LFWBD, we are always looking for ways to make our events the very best they can be for our members. That’s why, after every event, we ask attendees to complete a short feedback survey. It only takes a few minutes, but it makes a huge difference.

Following our Christmas Lights Bus Tour last December, everyone who completed the survey was entered into a prize draw to win a family ticket to Hobbledown. We are delighted to congratulate our winners – David, Jordana, Evie, Poppy and Nova – who recently enjoyed their well-deserved family day out.

From meeting a wide variety of animals to exploring the adventure playgrounds and taking part in all the exciting activities on offer, they had a fantastic day together, making some wonderful family memories. We are so pleased they had such an enjoyable visit.

While it’s lovely to be able to offer a prize as a thank you, the real value of our surveys is the feedback you provide. Your comments help us understand what you enjoyed most, what made a difference to your family and where we can continue to improve. They help shape future events, ensuring we continue to deliver experiences that are fun, welcoming and meaningful for everyone in our community.

Your feedback is also incredibly important when it comes to securing funding. Being able to demonstrate the positive impact our events have on families provides valuable evidence for our funders and supporters, including the National Lottery Community Fund. Quite simply, your feedback helps us continue doing what we do.

So, if you receive one of our surveys after an event, please do take a few moments to complete it. Every response really does count, and together we can continue building an even stronger, more supportive LFWBD community.

Congratulations once again to David, Jordana, Evie, Poppy and Nova, and thank you to everyone who continues to support LFWBD by sharing your feedback.

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.

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.

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.

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.

Our London Christmas Lights Bus Tour

This weekend, we kicked off the festive season in true Local families with bleeding disorders style with our annual London Christmas Lights Bus Tour and what a night it was! The Routemaster was packed full of excited families, old friends and new faces, all ready to soak up the sights and sounds of Christmas in the capital.

As we pulled up to Oxford Street, we were met with a truly magical moment, Father Christmas himself was waiting at the bus stop! With his trademark “ho ho ho!”, he jumped aboard, leading the bus in festive songs, listening to stories of how good the children had been all year, and giving out gifts to every child. His presence lit up the bus almost as much as the sparkling lights of London!

The lights were, as always, spectacular – Oxford Street, Bond Street, Piccadilly Circus, Trafalgar Square and even a few key sights like Big ben and The London eye.  But, what made the evening so special was the warmth and connection on board. Seeing our community come together, chat, laugh and celebrate was a reminder of just how far we’ve come.

We are incredibly proud of the supportive, kind, and caring network we’ve built through our charity. Events like this show the power of community, how shared experiences, fun, and friendship can make such a difference.

A massive thank you to the National Lottery Community Fund for supporting this event, and to the one and only Mark Salmen, whose incredible fundraising efforts helped make it all possible.  Also to Anna and Marie who take the lead on the organisation of this event and somehow manage to buy all the gifts and get them into central London!

We all stepped off the bus full of festive cheer and proud to be part of something so special.

Happy Christmas everyone!

#NationalLottery

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 6^th December – bus leaves at 4pm.

Thank you again to everyone who came and made the day so memorable!

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.

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. 

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