DNAdigest is a non-profit organisation based in Cambridge that works to promote and enable easier and more efficient sharing of genomic data to support and progress scientific research into all genetic diseases. With possibly some big genetic discoveries still unidentified or hidden, they are finding alternative pathways for the exchange of information between key stakeholders, including academia, industry and patient groups, to accelerate the process of diagnostics and treatment.
Most rare diseases have a genetic component and haemophilia is no different. I had the opportunity to meet the outgoing Managing Editor of DNAdigest’s online content and publications, Nadia Kovalevskaya at the Cambridge Rare Disease Network Summit in October. She was really intrigued about what I do and how the condition affects my life as well as my contribution to research.
I was delighted to share about this and my vision for the future of people living with haemophilia in their monthly blog, which was published today and available to read here. I hope my insights not only resonate by those affected but are received with interest by members of the wider scientific and research community, who may not be familiar with the ins and outs of my bleeding disorder.
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