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74 public initiatives (out of 98 initiatives in total)

The 1st European Patient Groups Advisory Board meeting for Leber’s Hereditary Optic Neuropathy (LHON) joined patient groups from 7 different European countries. The patient advisory board enabled an in-depth understandin...

The AIDA Project is an internal programme at UCB to support the evaluation and development of future business models in Europe. We are looking at how we can approach the market in different ways, considering a range of e...

The "Chain of Trust" project assessed the perspective of the main end users of telehealth services across the EU to see whether and how views have evolved since the initial deployment of telehealth and what barriers ther...

Cancer Voices’ Consumer Involvement in Research Program has nominated many trained consumers to research projects within around 25 research organisations to date. Researchers can request a suitable nominee via an electr...

In October 2015, two medical doctors and one scientist from GSK interviewed 5 female patients diagnosed with systemic lupus with cutaneous manifestations, or diagnosed with cutaneous lupus with skin symptoms only - four...

The tender ‘Empowering Patients in the Management of Chronic Diseases’ or EMPATHiE aims to deliver a research project to the European Commission to achieve a common understanding of the concept of patient empowerment (PE...

In 2014 we started a two day patient course to help patient advocates to understand issues from cancer basics through to clinical trial methodology. For example, we would look at what cancer is, how it develops, biomarke...

More than 300 rare cancers have been identified. ERN EURACAN covers all rare adult solid tumour cancers, grouping them into 10 domains corresponding to the RARECARE classification and ICD10. The management of rare cancer...