Category: Events
23-27 September 2019 | International Summer School on Rare Disease Registries and FAIRification of Data
25 September | International Ataxia Awareness Day
20 – 21 September 2019 | 6th International Meeting on Spastic Paraparesis and Ataxia
29 June – 2 July 2019 | 5th Congress of the European Academy of Neurology
29 June 2019 | Dystonia Today – special session at the EAN Congress 2019
29 June | Rare Neurological Diseases for Understanding nervous system functions & dysfunctions, 5th Congress of the EAN 2019
26 June | EJP-RD WP17 focus group meeting
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.
20 May 2019 | CPMS case discussion ‘Atypical Parkinsonism’
7 May 2019 | CPMS case discussion ‘Leukodystrophies’
6 May 2019 | CPMS case discussion “Dystonia, paroxysomal disorders, NBIAs”
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
11 – 15 March | #BrainAwarenessWeek
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.
28 February 2019 | Rare Disease Day 2019
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
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
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
21 – 23 November | German Academy for Rare Neurological Diseases Annual meeting
22 – 23 November | Movement Disorders in Children and Young Adults
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.