July 2020

Rare revolution magazine publishes CEO interview with Jamie O’Hara

Rare Revolution Magazine is published quarterly and reaches over 4000 readers in the rare disease community. The digital magazine is dedicated to giving rare disease a voice. The Rare Revolution Magazine features ‘The People of Rare’, these are interviews with CEOs of professional organisations, and the Editors describe the interviewees as ‘the beating hearts who are making their mark on the work of rare disease’.
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June 2020

Rare Disease Congress goes on-line and debates the goal of achieving accessible, available and affordable treatments by 2030

The European Congress of Rare Diseases, the largest patient led rare disease event, was organised as an on-line conference on 14th/15th May 2020. Over 1300 delegates participated, in the congress, which took as its theme ‘the Rare Disease Patient Journey in 2030’. This theme recognises that the next decade holds great potential for improvement. As the EU shapes it’s future policy and spending frameworks, ECRD 2020 provided an opportunity to co-create policy options today, that can lead to a better patient journey in 2030 and beyond.
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June 2020

Just published in Haemophilia

Recent research informs future improvement in the treatment for people with haemophilia, to inform the introduction of a more targeted approach to inform factor levels required to avoid a bleeding episode associated with physical activity
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May 2020

Sickle cell disease and thalassaemia – risks and impacts of COVID-19 for patients in Europe

The European Haematology Association (EHA) hosted a webinar in April 2020 with the Thalassaemia International Federation (TIF), to provide SCD and Thalassaemia patients with an update on the risks and impacts of COVID-19 patients in Europe. HCD Economics attended this event to raise internal level on knowledge and developments as SCD and Thalassaemia are diseases currently being researched by the HCD teams.
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May 2020

Practical Advice for researchers, undertaking studies out of the clinic

As part of a series of webinar’s developed to support the rare disease community, the World orphan drug congress (WCG), hosted part 6 in their series of COVID-19 webinars, on the subject of ‘Considerations When Moving Studies Out of the Clinic Setting’. The expert panel, David Borasky, Vice President of IRB Compliance for WCG, (WIRB-Copernicus Group) and Dawn Furey, Head of Portfolio Delivery Operations, The Janssen Pharmaceutical Companies of Johnson and Johnson and was moderated by Lyndsey McNair, Chief Medical Officer of WCG
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April 2020

The rare disease community convenes multiple webinars in response to COVID-19

During April there have been numerous webinars convened by and in support of the rare disease community. HCD Economics have been attending these events to raise internal level knowledge and developments across the various rare diseases currently being researched by the HCD teams. During May, HCD news will share reports on our news page, in a series entitled Rare Disease Community – COVID-19 update series. Detailed content from all April webinars will be published, to bring reports of the webinar content to our readers who may not have had the opportunity to attend them and for whom a summary plus guidance for further information will be a useful COVID-19/rare disease information resource.
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April 2020

Huntington’s Disease (HD) and COVID-19 - Specific Risks for HD patients outlined in April Webinar

The European Huntington Association and the European Reference Network for Rare Neurological Diseases hosted a webinar on April 6th. The webinar, entitled, ‘Huntington’s Disease and COVID-19 pandemic – a difficult combination’ provided information about the specific risks for HD patients, an update on current HD studies and trials and some advice on how to cope with the new situation. Participants had the opportunity to participate in an extensive open Q and A session and. 14 speakers, including neuropsychologists, neurologists, neurogeneticists and psychiatrists were available to respond to questions and concerns in 18 languages.
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