Since 1989, patient groups worldwide have marked April 17th as World Haemophilia Day, a day to raise awards and understanding of bleeding disorders. Thanks to the tight-knit nature of our community this day has been running for over 30 years now, and in that time a huge amount has been achieved in our quest to deliver treatment for all. But the work doesn’t stop, and we must all continue to do our bit to raise awareness, improve access to treatment and educate the world on haemophilia.
This year’s theme is Get+Involved. Ongoing restrictions on what we do should not restrict our ability to celebrate, they just alter how we do it. So this year WHD2020 challenges you to Get+Involved and get connected. Social media is an incredible tool for raising awareness, and online communities are more active than ever now. So get creative with your family, connect with your friends online, light the virtual world up red, and play your part in delivering treatment for all. Post photos and engage with the bleeding disorders community on our social media pages and share what World Haemophilia Day means to you!
Today should also be a time for us to reflect on the incredible clinicians, nurses and carers around the world. Many Little Bleeders supporters and their families will know first hand what an incredible job these people do every day, but now more than ever their hard work, courage and bravery should inspire us all. We can not thank them enough for their work for the bleeding community before, during and after this crisis. They are a huge part of this day and their efforts should be recognised and celebrated by us all.
For Little Bleeders, we’re sticking by our mantra today and encouraging young people and their families find ways to lead active lives. We’ve believe that an active life is central to managing the condition and allows little bleeders to see that despite their condition, they can lead fulfilling, healthy and normal lives. So, this World Haemophilia Day, our challenge to all of you is to get active, get involved and tell Little Bleeders, the bleeding disorders community and the rest of the world what you’re doing to raise awareness of haemophilia. Look out on social media for what we’re up to as well as Alex the announcing of the Lego winner.
I’m honoured to be a part of Little Bleeders and we are so proud of all of our little bleeders and their families, who despite their inherited condition show such spirit and determination to live big and achieve great things. So let’s show that spirit today!!
So, light up red, move more and be more.