Rare Disease Day 2020 - Q&A by EUCOPE

Rare Disease Day 2020 – Q&A by EUCOPE

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In recognition of Rare Disease Day 2020, On The Pulse director, Laurence Woollard, was put in the hot seat for an interview by the European Confederation of Pharmaceutical Entrepreneurs (EUCOPE). EUCOPE cover a range of trending topics with Laurence in the rare disease field, including patient education and engagement, health literacy, drug discovery and repurposing, […]

Cambridge Rare Disease Network RAREsummit 2019

VIDEO: Watch the highlights from CRDN RAREsummit 2019

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Highlights from the inaugural RAREsummit organised by Cambridge Rare Disease Network (CRDN) and hosted at the Wellcome Genome Campus, are now available to watch here.   About RAREsummit RAREsummit was a one day breakthrough event back in September 2019 with the motto ‘Patient as Partners.’ It brought together academics, scientists, medics, investors, entrepreneurs, government ministers […]

Contaminated blood hero image

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

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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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World Haemophilia Day 2019 – Online Exclusive for PharmaTimes

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It’s that special time of the year again… April 17 is officially World Haemophilia Day! People across the global haemophilia community will unite to increase awareness and understanding of those living with the condition and other bleeding disorders. To mark the occasion, we’re especially pleased to feature exclusively in PharmaTimes online. Hear from On The […]

2018 EHC Conference logo

On The Pulse at the 2018 EHC Conference in Brussels

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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 […]

WFH 2018 World Congress logo

On The Pulse at the WFH 2018 World Congress in Glasgow

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The countdown to the biggest global gathering of the bleeding disorders community is firmly on!  From May 20-24, we will be amongst thousands of attendees descending on the Scottish Event Campus (SEC) in Glasgow, Scotland for the 33rd biennial World Federation of Hemophilia (WFH) 2018 World Congress. WFH 2018 is one of the most hotly […]

Alex Dowsett (2018)

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

Posted on 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 […]

World Haemophilia Day 2018

World Haemophilia Day 2018 – Unlocking the Community’s Potential

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As global annual awareness days go, 17 April is undoubtedly the most significant for those affected by bleeding disorders – it’s World Haemophilia Day! This is the one occasion the community really gets to call its own. For 2018, the overarching theme is, Sharing Knowledge Makes Us Stronger. The World Federation of Hemophilia (WFH) want […]