EJP RD HIGHLIGHTS
EJP RD – Joint Transnational Call 2020 (JTC2020)
The Preliminary Announcement of the EJP RD JTC2020 is online! Topic is: PRE-CLINICAL RESEARCH TO DEVELOP EFFECTIVE THERAPIES FOR RARE DISEASES. There will be a two-stage submission procedure for joint applications: pre-proposals and full proposals. The call is scheduled to open on December 13, 2019.
ECRD. 15 – 16 May 2020. Stockholm, Sweden.
The EJP RD is a full partner of the ECRD event that is recognised globally as the largest, patient-led rare disease event in which collaborative dialogue, learning and conversation takes place, forming the groundwork to shape future rare disease policies. Early registration and abstract submission are open.
RE(ACT) Congress and IRDiRC Conference. 11-14 MARCH 2020, berlin, Germany
EARLY REGISTRATION IS OPEN UNTIL 30 NOVEMBER. Topics will be from “Methodologies to assess the effect of diagnosis and therapies on RD patients” to “Patient engagement in drug development and clinical trial”.
“Yakup’s Journey to Hope” video in collaboration with EJP RD
Yakup’s Journey to Hope was created in collaboration with EJP RD and GA4GH Driver Project. Dr. Sergi Beltran of EJP RD shares how the driver project has helped one patient receive a diagnosis through international collaboration and data-sharing.
Latest news
EURORDIS Photo Award 2020
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. Read more about EURORDIS Photo Award 2020[…]
Real-world evidence to support HTA/payer decisions about highly innovative technologies
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 Read more about Real-world evidence to support HTA/payer decisions about highly innovative technologies[…]
Training: Hands-On introduction to NGS variant analysis
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 Read more about Training: Hands-On introduction to NGS variant analysis[…]
European survey on national training activities in clinical research
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 Read more about European survey on national training activities in clinical research[…]
ICPerMed Recognition 2020
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 Read more about ICPerMed Recognition 2020[…]
ERN webinars
ERKNet. Clinical Implications of Genetics in Children with Nephrotic Syndrome by Dr. Olivia Boyer. 12 November 2019, 4 pm – 5 pm CET Endo-ERN. Alström Syndrome by Dr. by Pietro Maffeii, 25 November 2019, 3 pm CET ERN-RND. Neuroacanthocytosis syndromes by Dr. Adrian Danek. 3 December 2019, 3 pm CET ERN-NMD. Classification of inflammatory myopathies Read more about ERN webinars[…]
“Yakup’s Journey to Hope” video in collaboration with EJP RD
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 Read more about “Yakup’s Journey to Hope” video in collaboration with EJP RD[…]
Strategic research agenda for a Public-Private Partnership for Health Innovation under Horizon Europe
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 Read more about Strategic research agenda for a Public-Private Partnership for Health Innovation under Horizon Europe[…]
GA4GH 7th Plenary
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 Read more about GA4GH 7th Plenary[…]
ERN Webinar: “Non-Infectious Complications of Peritoneal Dialysis in Children”
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.