Big day today, you won’t hear it on the news. You won’t see it on the TV. But for us, it means a lot. It means we are not alone. It means we have connections. It means we keep going Rare Disease Day youtu.be/zEQ828Lkxac?si…

Where would we be without our amazing women who stand beside us and inspire us every day♥️ Thank you #IWD2024 #InspireInclusion

Huge thanks to DBAS UK and Diamond Blackfan for joing forces to fund this project. Closing date 11 April. Please RT. imperial.ac.uk/jobs/search-jo…

Our annual family weekend booking platform is open. Free for all families to attend. All meals, accommodation paid for. If you have any questions please ask. We will be launching our re-brand so it’s really exciting for us. (Don’t forget your DBS check) Leisa Batkin

There's still time to register for the Rare Inherited Anaemias Online Patient Event on 23/03/24, 1-3pm. All RIA patients welcome - spread the word!! Register at bit.ly/3OfzkKy. Expect representatives from MFT NHS, DBAS UK, Nandini Sadasivam, RMCHosp #RIA #HCC #NHS #Haem

DBAS STORIES. Introducing Freya, our tiny but mighty hero! After battling in ICU she was diagnosed with a DBAS. Freya’s got big dreams – she’s all set to be a firefighter, driving that big red truck! 🚒 We’re celebrating a big milestone - Freya’s 50th transfusion. Go Freya

DBA UK is off to the #bsh2024 conference today! A chance to meet all the doctors, scientists, researchers and big pharma to have a look at what’s going on and make new connections. We will keep you posted on our experiences b-s-h.org.uk?

We’ve been meeting our allies and favourite people today Josu de la Fuente Noemi Roy. So many conversations and discussions about the importance of the community and the way we are connected. @CongenitalAnaemia

Day 2 for us at BSH - Haematology #bsh2024 Come over and say hello. 👋🏼

last day at #bsh2024 sessions with our consultants : transplant and emerging technologies, also discussing how it feels to have a rare anaemia and how we can all work better together. BSH - Haematology Thanks for looking after us Liverpool! ‘Nice one La’ ☺️ Steve Rotheram

It’s our family weekend soon and we are going to have an amazing time! If you or a family member has DBAS and would like to attend please get in touch ♥️🩸♥️

Yesssss! sciencedirect.com/science/articl… Marcin Wlodarski Josu de la Fuente Deena Iskander And ALL involved! Thank you! We are so grateful for all you do and the difference this will make for our community

DBAS family weekend is underway and look at us all! All learning. All giving and sharing our experiences. It’s a privilege to be around our people. #ourclub

Thank you Deena Iskander Beth Payne Noemi Roy John Strouboulis For all you support and dedication to our families. Really positive news with new information and hope We are so grateful for your continued dedication to our community.

Our friends

♥️FUNDRAISING ♥️ So here is a quick way to fundraise that takes no time at all Set up a direct debit through just giving. You can choose any amount and then just forget it Tell your friends to do it Tell your family to do it. justgiving.com/diamondblackfan

As a small charity supporting families we cannot thank NW DESIGN enough for his service and support. Look at our new re branding! Thanks John - you’ve been brilliant

Some of our Jess friends from Merseyrail are doing the Three Peaks Challenge. They are raising funds for an amazing charity DBAS UK who do so much #ForOliver and others like him. Thank you so much!! Good luck! 🚂 ⛰️⛰️⛰️🏆💪