Talking informed consent for gene therapy on BloodStream™ podcast

Posted Leave a commentPosted in Media

The latest episode of BloodStream™, a bleeding disorders community podcast, is now freely available to listen to, featuring a guest appearance from On The Pulse director, Laurence Woollard, talking all things informed consent for gene therapy in haemophilia. Laurence is accompanied by Dr Rich Gorman and Dr Dakota Rosenfelt as they unpack for listeners their recently […]

NEW PUBLICATION: Improving informed consent for gene therapy

Posted Leave a commentPosted in Journal publications

We are excited to share our latest review article on informed consent practices in the age of genetic medicines, published in the peer-reviewed, open access journal, Therapeutic Advances in Rare Disease (TAIRD).  On The Pulse director, Laurence Woollard, joined forces with Dr Rich Gorman and Dr Dakota Rosenfelt, to produce the comprehensive paper titled: “Improving […]

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Spotlight on History: Contaminated Blood and the Origins of the Infected Blood Inquiry

Posted Leave a commentPosted in Events, Infected Blood Inquiry

The Infected Blood Inquiry, chaired by Sir Brian Langstaff, is due to begin its public hearings in London on Tuesday 30 April 2019. The inquiry is examining the circumstances in which men, women and children were given contaminated blood and contaminated blood products in the UK, in particular since 1970. As of next week, people […]

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Factor This! Series: In Conversation with John Pasi

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The working year is nearly over but we’re thrilled to be rounding off our Factor This! blog series with yet another exceptional scientist and clinical thought-leader in haemophilia – Professor John Pasi. Since 2003, John has been Professor of Haemostasis and Thrombosis and Honorary Consultant Haematologist at Barts and The London School of Medicine and […]

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On The Pulse at the 2018 EHC Conference in Brussels

Posted Leave a commentPosted in European Haemophilia Consortium, Events

There are only two weeks to go until one of the largest rare bleeding disorders patient gatherings on the continent – the 2018 European Haemophilia Consortium (EHC) Conference! Along with the European Association of Haemophilia and Allied Disorders (EAHAD) Congress and the World Federation of Hemophilia (WFH) World Congress, the EHC Conference is one of the […]

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Factor This! Series: In Conversation with Mark Skinner

Posted Leave a commentPosted in Factor This!

This month’s guest for our Factor This! blog series needs no introduction. Mark Skinner’s universal reputation as a stalwart advocate and progressive leader for people with bleeding disorders very much precedes him. Mark’s wealth of experience spanning over 30 years, makes his CV read like a How to book for specialising in international public policy […]

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Cyclist Alex Dowsett: ‘Haemophilia is the Catalyst to My Success!’

Posted Leave a commentPosted in Awareness Days, Haemophilia Stories

Few rare disease communities can boast of having a champion cyclist to call their own. In haemophilia, Alex Dowsett has pedalled past the impossible and is still overtaking any doubts of what can be achieved living with a severe bleeding disorder. At just 29 years of age, Alex has been competing consistently at the pinnacle […]