The Executive Summary of the ECRD conference is now available

The Executive Summary of the 10th European Conference on Rare Diseases and Orphan Products held on 14 – 15 May 2020, is now available online. The interactive Executive Summary is a document compiling the key takeaways from the conference, highlights from each theme, key facts and figures on the event itself, full list of committee members, Read more about The Executive Summary of the ECRD conference is now available[…]

RD-Connect GPAP-Phenostore Webinar

RD-Connect GPAP will present the new module GPAP-Phenostore, used to collect standardised phenotypic information from individuals whose omics data will be analysed. An introductory video of this new module can be accessed here. The online Webinar will take place next Thursday 26th November from 15h (CET) to 16h (CET). If you would like to attend, Read more about RD-Connect GPAP-Phenostore Webinar[…]

Duchenne Patient Academy 2020

Duchenne Patient Academy is hosting on November 30– December 6 an online training dedicated to patient advocacy. The training is open to Duchenne Muscular Dystrophy and Becker muscular Dystrophy patient advocates, with selected days open to all Motor Neurone Disease patient advocates who might be interested. It is of particular interest to: individuals affected by Read more about Duchenne Patient Academy 2020[…]

WikiPathways Training Course and User Guide

Pathways explain how the cells in our bodies work. Like a wiring diagram, pathways show the flow of interactions and reactions among molecules that perform all the functions of life. There are basic metabolic pathways, e.g. the metabolism of sugars, signaling pathways, like the development of the heart, and there are also pathways for diseases Read more about WikiPathways Training Course and User Guide[…]

Duchenne Awareness Day – Sept 7

Duchenne Muscular Dystrophy is a degenerative genetic condition which causes weakness and eventual loss of use in muscles of affected boys because of the absence of the dystrophin protein. September 7 is World Duchenne Awareness Day. On this day World Duchenne Organization raises awareness for Duchenne and Becker muscular dystrophy around the globe. Every year, Read more about Duchenne Awareness Day – Sept 7[…]

ICCBH Virtual Forum – Bone Fragility Disorders in Children

The ICCBH biennial conference is firmly established on the international meeting calendar and regularly attracts audiences in excess of 600 delegates to hear about and discuss the latest research into paediatric bone disorders. This year, in addition, ICCBH will organise a virtual meeting on bone fragility disorders on the 18-20 November 2020. The Virtual Forum Read more about ICCBH Virtual Forum – Bone Fragility Disorders in Children[…]

European Research & Innovation Days: Science is Wonderful! 2020

The online science exhibition will take place online between 22 and 24 September 2020 and is part of the European Research & Innovation Days. Slowing down global warming, improving our cities, preventing hunger and drought, fighting cancer… It’s all part of the topics that schools, youth, citizens and stakeholders will discover through Science is Wonderful!, a Read more about European Research & Innovation Days: Science is Wonderful! 2020[…]

FAIRplus: Fellowship Programme

The FAIRplus Fellowship Programme is a comprehensive training programme in FAIR data management. The programme will run for a period of approximately 8 months, starting in April 2021 and will guide its fellows through a series of modules combining online learning, ‘training on the job’ and short face-to-face meetings. After completing the programme, the fellows will Read more about FAIRplus: Fellowship Programme[…]

EJP RD General Assembly and Consortium meeting

The EJP RD is glad to announce its second General Assembly (GA) and Consortium meeting that will take place from 14 to 18 September 2020.  Due to Covid-19, the 2020 GA meeting will be held online. The GA meeting will be the perfect occasion to bring together all EJP RD members to have an open discussion on the work Read more about EJP RD General Assembly and Consortium meeting[…]