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 […]
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 […]
To mark World Haemophilia Day on April 17, we are pleased to have a special feature published online at Rare Revolution magazine entitled, ‘Making Sense of the Headlines: Empowered and Informed Treatment Choice in Haemophilia’. On The Pulse Director, Laurence Woollard, was delighted to co-author the feature with Dr Rich Gorman, an interdisciplinary social scientist […]
We’re delighted to feature in the latest edition of Rare Revolution Magazine entitled ‘RARE Blood’, which is shining a spotlight on all things rare bleeding disorders. The five-page in-depth supplement includes On The Pulse director, Laurence Woollard, discussing the work we undertake in the haemophilia and wider rare disease community. The interview also offers insight […]
It’s goodbye to summer and hello to our first Autumn instalment in our Factor This! blog series. We’re very lucky to feature one of the most internationally recognised haematologists of our time – Professor Flora Peyvandi. Flora has justifiably earned this reputation through her extensive portfolio of basic and medical science research, primarily into the […]
Do you, or someone you care for, have experience of a bleeding disorder, whether personally or professionally? Stop The Bleeding needs your help to identify key research priorities relating to all inherited and acquired bleeding disorders. Current and previous patients with bleeding disorders, relatives, carers and healthcare professionals from across the UK were surveyed in […]
For almost three decades, Laureen Kelley has dedicated herself to educating and improving the lives of individuals and families impacted by haemophilia, both at home in America and throughout the developing world. Over this time, Laurie has cemented her status as one of the most respected and beloved thought leaders in global haemophilia advocacy. Her […]
It’s officially Rare Disease Day 2018 – the major event of the year where the global rare disease community come together in unity and solidarity, to champion for our rights and further the rare disease cause (see Rare Disease Day 2018 – Join in and #ShowYourRare) I could have so easily focussed here on what’s happening […]
In four weeks time, the global rare disease community will join together and stand as one to highlight and bring public attention to the challenges, hopes and needs of those affected in support of Rare Disease Day 2018. The annual awareness event, which was founded and arranged by the European Organization for Rare Diseases (EURORDIS), is now […]
I’m a tad late to the Christmas party with all the feel-good festive updates and extra trimmings of what’s to come for On The Pulse in 2018. But to avoid any meaty excesses or glossing over trifles, the last few months since our inception has proved to be a hugely insightful and productive phase in […]
