Photo submissions for the Photo Award 2020 are now open, until 16th January 2020. The EURORDIS Photo Award is an opportunity to visually express what it means to live with a rare disease and to share your story with the rare disease community and beyond. The contest is open to all nationalities, ages and diseases.…
RWE multi-stakeholder initiative – Paper for consultation The draft stakeholder guidance of the multi-stakeholder initiative on ‘Real-world evidence (RWE) to support HTA/payer decisions about highly innovative technologies’ is now open for consultation until 6 January 2020. Commissioned by the Belgian healthcare payer INAMI/RIZIV, this work defines how RWE can be best used to close evidentiary gaps for HTA…
This training gives an introduction to the use of several popular NGS analysis software packages. Target Audience: All scientists When. 20 – 21 January 2020 (10.00 – 17.00) Objectives Using a full publicly available chromosome read-set from one of the 1000 genome samples: Perform a complete analysis workflow including QC, read mapping, read coverage analysis, and…
An interesting publication based on a survey in 11 ECRIN countries, finds significant investment in training in clinical research in individual countries but need for cross-network exchange. Abstract. Investigator-initiated clinical studies (IITs) are crucial to generate reliable evidence that answers questions of day-to-day clinical practice. Many challenges make IITs a complex endeavour, for example, IITs…
Rome (Italy), 6 November 2019 – The International Consortium for Personalised Medicine (ICPerMed) has published the announcement of their third “Best Practice in Personalised Medicine” Recognition 2020. The objective of this recognition is to honour, encourage, promote and disseminate outstanding best practice examples in personalised medicine. Responsible authors (applicants from any country) of candidate proposals…
Yakup’s Journey to Hope was created in collaboration with EJP RD and GA4GH Driver Project. Follow the story of Yakup as he embarks on a journey to find a diagnosis for his neurogenetic rare disease condition. At GA4GH Plenary 2019, Dr. Sergi Beltran of EJP RD shares how the driver project has helped one patient…
Five industry associations representing pharmaceutical, biotech and medical technologies industries operating in Europe (COCIR, EFPIA, MedTech Europe, EuropaBio and Vaccines Europe) have come together to work on a Strategic Agenda for Innovation in Healthcare. This Agenda falls in the framework of the proposed European Health Innovation Public-Private Partnership (PPP) under Horizon Europe. Its objective is to guide future public-private…
GA4GH 7th Plenary is happening now, this week, October 21-23! If you’re unable to attend in person, tune in to the Plenary live stream via the GA4GH youtube channel. A video, on a positive patient story where sharing genomic data and international collaborations have been fundamental for the patient and the family, will be launched during…
Join the upcoming webinar on Nephrology organized by ERKnet scheduled for Tuesday 29 October 2019 from 4 pm to 5 pm, the speaker is Dr. Enrico Vidal. For registration click here. ERKNet Webinar Schedule 2019 can be seen here.
Take part in an interactive webinar to discuss the results of the first large scale quantitative survey on patients’ preferences in data protection/ sharing and how you can use the results in your advocacy. This interactive webinar will be led by with Sandra Courbier, Rare Barometer leader and Virginie-Bros Facer, EURORDIS Research Director, the agenda…