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