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234 public initiatives (out of 324 initiatives in total)

Analyzing the status quo of people living with diabetes who develop kidney disease as a starting point for developing preventive medicine. Diabetes and kidney disease

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...

PFMD is co-creating a Patient Engagement Quality Guidance (PEQG) and as part of the Patient Engagement toolkit, we would like to collect the learnings from all stakeholders about how to do patient engagement (PE). WH...

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...

Rare bone diseases encompass disorders of bone formation, modelling, remodelling and removal, and defects of the regulatory pathways of these processes. They result in short stature, bone deformity, teeth anomalies, pain...

This ERN brings together experts in rare congenital malformations and rare intellectual disability disorders. Congenital malformations affect one in 40 babies. For more common malformations, such as cleft lip, there are...