News - March 2021

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16th March 2021 - Gene Therapy Webinar

Our Trustee Kelly Bellamy and her colleague Debbie McIntosh ran an excellent webinar for us today all about the basic science of gene therapy. The session was well attended by members who learned a lot about how gene therapy works and how it differs from gene editing. A lot of the language around gene therapy was explained in clear and easy to understand terms which we are so grateful for as this is a complex area. A big thank you to them both for taking the time to prepare such an excellent presentation and for taking the time to come and share that with us.

Womens Bleeding Disorder Webinar
23rd March 2021 - Womens Bleeding Disorder Webinar

To celebrate Women's History month, we spent a fantastic evening sharing stories of women living with bleeding disorders. Huge thanks to Hannah (Youth Ambassador and VWB Type 2 patient), Laura Mack (member with daughter who has mild haemophilia) and Gemma Gardner (member and mum to Zane who has severe Haemophilia A, daughter Summer and a symptomatic carrier herself) who kicked off the evening by sharing their three very different stories of living with bleeding disorders. It was a lovely, relaxed evening and we all enjoyed sharing our stories, asking questions and most importantly giving support and advice to each other!

The evening flew by, but with still so many questions to ask and stories to be shared, we might just have to make this a quarterly event. Watch this space! Thank you to all the lovely ladies that joined us, I'm sure we could have kept talking and inspiring each other all night.

Events like these are so important in raising awareness of women living with bleeding disorders; empowering women to be brave, ask the right questions, know the symptoms and fight for an early diagnosis for a better quality of life. There's a long way to go but we've made a good start