17 – 19 June | ERN-RND Annual Meeting 2019

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:

Annual meeting

  • 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:

Board meeting

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.

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

21-22 November | 4th Conference on European Reference Networks

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.