You can find on this page the main events organized by the EJP RD members.
7th International conference on Rare and Undiagnosed diseases Addressing patient needs for Rare Disorders in India
RE(ACT) Congress America 2019
- From May 8th to 11th 2019
- Taking place in Toronto, Canada
North American edition of the RE(ACT) Congress 2019 to be held at the Sheraton Center Toronto Hotel in Toronto, Canada, from May 8-11 2019. This 5th edition, the first to be held in North America will include sessions on clinical trials and registries, generalizable rare disease therapeutic approaches, gene editing, cell & gene therapy, stem cells, genetically modified cell therapies/clinical applications of gene therapies indigenous populations and rare diseases, and patient-focused drug development. REGISTER NOW!
Workshop : Organizing & Maximizing Rare Disease Biological Samples Data in Biobanks
- From April 1st to 2nd 2019
- Taking place in Milan, Italy
This training workshop is a part of a series of capacity building programs put forth by the European Joint Programme on Rare Diseases(EJPRD). EJPRD is a European Commission co-funded project (GA N° 825575, 2019 – 2023) with the goal “to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation”.
The organisation of this workshop series on biobanks and biological samples is coordinated by Fondazione Telethon, Italy. Project partners in this training series are BBMRI-ERIC, Charité – Universitatsmedizin Berlin, Institute of Health Carlos III Spain, Hacettepe University Turkey, Medical University Gdansk Poland, University Medical Centre Groningen the Netherlands and Vilnius University Hospital Lithuania.
All the information can be found here.
International Summer School on Rare Disease Registries and FAIRification of Data
- 23 – 27 September 2019
- Istituto Superiore di Sanità, Rome, Italy
The International Summer School on Rare Disease Registries and FAIRification of Data is a part of a series of training activities proposed by the European Joint Programme on Rare Diseases (EJP RD).
In particular this Course is a part of WP14, which aims to organize residential training courses in different Countries on Data Management and Quality.
The Course is made up of 5 days of residential training organized by Istituto Superiore di Sanità (ISS) in close collaboration with, mainly, EJP RD task partners [LUMC & UoG (Endo-ERN), IOR (Bond-ERN), HSK (Metab-ERN), EURORDIS, ISCIII, LUMC, INSERM (RaDiCo), UMCG, DTL-Projects (EIXIR-NL), CNR (ELIXIR -IT), AMC].
Quality assurance, variant interpretation and data management in the NGS diagnostics era
- 23-25 October 2019
- Leuven, Belgium
The Training Courses on Standards and quality of genetics/genomics data in laboratory and clinical research practice are a part of a series of programs put forth by the European Joint Programme for Rare Diseases (EJP RD). EJP RD is a European Commission co-funded project (GA 825575, 2019-2023).
The main objectives of the program WP14 are to decrease RD data fragmentation and increase data quality through training activities on data management & quality which will raise the level of capacities and help data sharing and networking within the RD community.
The organisation of the specific training courses in program WP14.2 is coordinated by KU Leuven. Project partners are EKU Tübingen, ACU/ACURARE Istanbul, ISS Rome, IPCZD(CHMI) Warsaw, CNAG-CRG Barcelona, INSERM (AMU) Marseille, UMC Groningen.
Registration open until Jul 31st, 2019
EURORDIS Digital School on Social & Digital Media
- 8-9 October 2019
- Ågrenska Resource Centre in Gothenburg, Sweden
The first edition of the EURORDIS Digital School on Social & Digital Media will be held on 8-9 October 2019, at the Ågrenska Resource Centre in Gothenburg. This capacity-building programme aims at empowering rare disease patient advocates to use digital communication tools to improve the strategic outreach and community-building capacities of their organisations. Interested patient advocates can submit their application until 7 June 2019.