The ERN-RND Annual Meeting is taking place in Siena, Italy on the 17-19 June 2019. The coordinating members, clinicians and researchers from ERN-RND expert centres across Europe, ePAG patient representatives and industry representatives will attend.
Please find the full meeting agenda here.
Monday 17 June:
- Scientific symposium
- Poster session
- ePAG representatives meeting
Tuesday 18 June:
- ERN-RND overview
- CPMS live case discussion
- CPMS hands-on sessions
- Results, work for years 3-5 & brainstorming for next 5 years
- Disease group sessions Frontotemporal Dementia, Choreas & Huntington’s Disease, Atypical Parkinsonian Syndromes, Leukodystrophies, Dystonias/Paroxysmal Disorders (non-epiletical ones)/Neurodegeneration with Brain Iron Accumulation, Cerebellar Ataxias & Hereditary Spastic Paraplegias
Wednesday 19 June:
May is Huntington’s Disease Awareness Month.
Raise awareness by lighting up your home, sharing pictures and stories on social media. You can use the hashtag #LightItUp4HD .
You can find more information on the European Huntington Association webpage’s here.
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.
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
from Genome to Precision Medicine in Pediatric Movement Disorders
Date: 30 November – 1 December 2018
Venue: Barcelona, Spain
Pediatric Neurology Section, Vall d’Hebron University Hospital
Course name: Movement Disorders in Children and Young Adults course
Date: 22 – 23 November 2018
Venue: University Medical Centre Groningen, Netherlands
Please find more information about the course on the MDS website.
The 4th Conference on European Reference Networks is taking place on the 21-22 November 2018 in Brussels, Belgium.
European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe and were first launched in March 2017. 24 ERNs are now operational.
Gathering more than 400 participants, the main objectives of the conference will be to:
- Mark that ERNs are entering the next stage of their lifecycle: the deployment phase.
- Present the main clinical and organisational outcomes and success stories of the networks and consider the lessons learned.
- Identify the main challenges, potential improvements and opportunities for the functioning and management of the networks and the way forward for the future of the ERN system.
ERN-RND members and ePAG representatives will attend.
For more information, please visit the European Commission’s webpage.
Name: CPMS for new users: Authorisation – Authentication – First login
Date: 20 November, 14h
Join the webinar here