Author: ERN-RND
MoU signed between ERN-RND & EAN
The ERNs are getting ready for the challenges of enlarging the ERNs
27-29 March | 1st SCA Global Conference
28 March 2019 | CPMS case discussion “Choreas & HD”
25 March | CPMS case discussion “Dystonia/Paroxysmal disorders/NBIA”
25 March | ERN Coordinators meeting
Call for Proposals – Grant Opportunity for BPAN and MPAN research
11 – 15 March | #BrainAwarenessWeek
18 February 2019 | Trial readiness and registries in RND workshop report
6 – 8 March 2019 | German Human Genetics Conference
Event name: German Human Genetics Conference
Date: 6 – 8 March 2019
Venue: Weimar, Germany
Holm Graessner, coordinator of ERN-RND and Solve-RD will give a talk on Thursday 7 March, 12:00-13:00, “Two years since the start of the European Reference Networks: why it is important to include human genetics!”
More information about the event can be found here.
Rare Disease Day: a new EU platform to support better diagnosis and treatment
The ERNs are building a common training and eLearning strategy
28 February 2019 | Rare Disease Day 2019
ERN-RND, ZSE and Solve-RD coordinating offices on #RareDiseaseDay
Living with ataxia and advocating around the world #RareDiseaseDay
Working in the BRAIN-TEAM: raising awareness of rare diseases daily #RareDiseaseDay
Being diagnosed at the centre of rare diseases in Tübingen (ZSE) #RareDiseaseDay
Pediatric ataxias – the daily work of a clinician in Italy #RareDiseaseDay
19 February | Webinar ERN Clinical Patient Management System (CPMS 17.0)
18 February | ERN-RND workshop on trial readiness and registries in RND
Event: European Reference Network for Rare Neurological Diseases workshop on trial readiness and registries in RND
Multi-stakeholder workshop (clinicians, industry, patients, regulators, and registry administrators) that will pursue the following objectives:
- Bring together leading persons of the different stakeholder groups and form a RND trial readiness network at European level
- Map clinical status of trial readiness for the different RND
- Discuss and agree minimal quality requirement for trial-ready registries
- Define areas in which ERN-RND can facilitate trial readiness for RND
- Form multi-stakeholder working groups for RND and define action points these working groups will work on
Date: February 18 2019
Venue: Amsterdam, the Netherlands
