Latest News

The British Liver Trust (BLT), Director of Policy and Communications states in an interview with HCD Economics that the most important message from the results of the GAIN study is the growing burden of NASH and how urgent action is required to improve awareness and early diagnosis of the disease.

the study addresses an important research gap in one of the most common causes of chronic liver disease.

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’.

HCD Economics is setting research priorities in the field of rare disease and blood related disorders. Beta-Thalassaemia is the latest disease to be incorporated into the HCD research portfolio. HCD Economics is focused on understanding the beta-thalassemia patient and with that understanding, undertake socio-economic research to generate evidence to support patient advocacy.

WFH affirms its commitment to bringing the bleeding disorders community together in the name of TREATMENT FOR ALL. WFH believes this commitment is especially important during the COVID-19 crisis. For six days (14th-19th) in June 2020, WFH held a virtual event to bring the bleeding disorders community together.

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.

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

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.

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