ERN ITHACA online board meeting 2020
From 11 to 13 December 2020
At : Dusserldorf - Germany
Events
2020 Rare Drug Development Symposium
From 07 to 08 January 2021
At : Pennsylvania - United States
Re (act) International Congress on Research Of Rare And Orphan Diseases
From 14 to 17 January 2021
At : Berlin-Germany
First European Congress on Kawasaki Disease – Onsite face to face sessions and online sessions
From 15 to 17 January 2021
At : Paris-France
Huntington's Disease Youth Organisation - 1st Young Adult Congress
From 13 to 15 March 2021
At : Glasgow-Scotland
EuRRECa annual meeting 2021
On 13 April 2021
At : Milan-Italia
RVA's biennial National Rare Disease Summit
From 13 to 14 November 2021
At : Sydney-Australia
Courses and educational initiatives
ERN-EURO NMD 2021 Translational Summer School
The European Reference Network for rare or low prevalence complex disease (ERN-EURO NMD), in collaboration with the Neuromuscular Network (TREART-NMD), will have their next Summer School in Leiden, Netherlands, from 6 to 10 December 2021. The Summer School aims at facilitate clinical development of therapies for NMDs, and has the objectives to educate clinicians and researchers working in the NMD field on translational therapy development, and outline how networks such ERN-NMD and TREAT-NMD facilitate therapy development.
FAIRplus Fellowship Programme
The FAIRplus Fellowship Programme is a training programme in FAIR data management. The FAIRplus programme aimed at developing tools and guidelines for FAIR (Findable, Accessible, Interoperable, Reusable) life science data. Eligible candidates are from FAIRplus partner organisations. There are also limited places for applicants from outside FAIRplus progamme (small and medium size of enterprises). Interested candidates will apply by submitting a FAIRification project they will develop during the programme. The programme will start in April 2021, and will last 8 months.
Media
The EJP RD Short guide: Rare disease patient partnership research projects
The EJP RD Short guide on patient partnerships in rare diseases research projects encourages fruitful, sustainable and enduring partnerships between scientists and patient organisations. The guide is full of definitions, testimonials of patient partnerships, examples, preventing common pitfalls and accompanying applicants. It will support applicants in describing the role and added value of patient partnerships in research proposals.
The guide was developed with the help of an EURORDIS working group, and other patient representatives, research funders, and by independent academic researchers. The guide will foster a partnership culture and will as well improve understanding of the added value of patient engagement and basic involvement, pre-clinical, translational and social research for the Rare Disease Community in Europe and beyond.