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Author: ERN-RND
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
12 June 2019 | IMI Stakeholder Forum 2019
May 2019 | Huntington’s Disease Awareness Month
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.
European Brain Council Election Manifesto
20 May 2019 | CPMS case discussion ‘Atypical Parkinsonism’
Dystonia Europe survey – please participate
7 May 2019 | CPMS case discussion ‘Leukodystrophies’
6 May 2019 | CPMS case discussion “Dystonia, paroxysomal disorders, NBIAs”
EAN interviews ERN-RND coordinator Holm Graessner
#BrainLifeGoals project grants from EFNA
Brain, Mind and Pain #BookofEvidence for 2019-2024 EU mandate released
Report – First SCA Global Conference
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.
