Author: ERN-RND
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
ERN-RND member Pr Boespflug-Tanguy & team find new Leukodystrophies gene and potential treatment
ERN-RND short fellowship experience in Tübingen, Germany
7 – 8 February 2019 | Solve-RD Annual Meeting
17 – 19 January 2019 | ERN-RND Winter school
18 January 2019 | Webinar Solve-RD: data analysis in GPAP
16 January 2019 | Webinar Solve-RD: PhenoTips & data submission to GPAP
Full report – 4th European Reference Networks Conference
New European Joint Programme on Rare Diseases – €100 million allocated to rare disease research
Poster – Diagnostic flowcharts, a tool to disseminate expert knowledge on rare neurological diseases
New #EUProtects video released by the European Commission
Poster: “CPMS use cases in ERN-RND”
30 Nov – 1 Dec | from Genome to Precision Medicine in Pediatric Movement Disorders
Course name:
from Genome to Precision Medicine in Pediatric Movement Disorders
Date: 30 November – 1 December 2018
Venue: Barcelona, Spain
Organized by:
Pediatric Neurology Section, Vall d’Hebron University Hospital
Website:
http://www.aulavhebron.net/aula/index.php?go=proximos_cursos
