Continue reading “29 June – 2 July 2019 | 5th Congress of the European Academy of Neurology”
Category: Events
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.
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.
20 November, 14h | CPMS Webinar
Name: CPMS for new users: Authorisation – Authentication – First login
Date: 20 November, 14h
Join the webinar here