ERN-RND – Page 6 – ERN-RND | European Reference Network on Rare Neurological Diseases

ERN-RND recorded webinar: “Improving care for rare disease patients in Europe – Rare Disease Day 2021”

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“Der Weg zur europaweiten Zusammenarbeit” von Holm Graessner

Continue reading ““Der Weg zur europaweiten Zusammenarbeit” von Holm Graessner”

24 February 2021 | EURORDIS Black Pearl Awards

Continue reading “24 February 2021 | EURORDIS Black Pearl Awards”

26 February 2021 | Tag der Seltenen Erkrankungen in Mainz

Continue reading “26 February 2021 | Tag der Seltenen Erkrankungen in Mainz”

23 February 2021 | ERN-RND webinar “Improving care for rare disease patients in Europe – Rare Disease Day 2021”

Continue reading “23 February 2021 | ERN-RND webinar “Improving care for rare disease patients in Europe – Rare Disease Day 2021””

23 February 2021 | Rare 2030 Final Policy Conference

Continue reading “23 February 2021 | Rare 2030 Final Policy Conference”

ERN-RND recorded webinar: “Rare Disease Natural History Studies: Experience from the GNAO1 Natural History study in a pre and postpandemic world”

Continue reading “ERN-RND recorded webinar: “Rare Disease Natural History Studies: Experience from the GNAO1 Natural History study in a pre and postpandemic world””

ERN-RND recorded webinar: “Progressive Supranuclear Palsy – Update on Diagnostics, Biomarkers and Therapies”

Continue reading “ERN-RND recorded webinar: “Progressive Supranuclear Palsy – Update on Diagnostics, Biomarkers and Therapies””

15 February 2021 | Online workshop “Good practice nelle Reti di Riferimento Europee”

Continue reading “15 February 2021 | Online workshop “Good practice nelle Reti di Riferimento Europee””

Research article: “Novel instructionless eye tracking tasks identify emotion recognition deficits in frontotemporal dementia”

Continue reading “Research article: “Novel instructionless eye tracking tasks identify emotion recognition deficits in frontotemporal dementia” “

9 February 2021 | ERN-RND webinar “Rare Disease Natural History Studies: Experience from the GNAO1 Natural History study in a pre and postpandemic world”

Continue reading “9 February 2021 | ERN-RND webinar “Rare Disease Natural History Studies: Experience from the GNAO1 Natural History study in a pre and postpandemic world””

Case report: “Video Case Report: Action Myoclonus After CAR-T Cell Therapy”

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Rare Disease Day 2021 video

Continue reading “Rare Disease Day 2021 video”

New ERN-RND project manager

Continue reading “New ERN-RND project manager”

New ERN-RND CPMS helpdesk

Continue reading “New ERN-RND CPMS helpdesk”

Brief report: “Development of SARAhome, a New Video‐Based Tool for the Assessment of Ataxia at Home”

Continue reading “Brief report: “Development of SARAhome, a New Video‐Based Tool for the Assessment of Ataxia at Home””

ERN-RND February 2021 Newsletter

Continue reading “ERN-RND February 2021 Newsletter”

2 February 2021 | ERN-RND webinar “Genetic dystonia and treatment”

Continue reading “2 February 2021 | ERN-RND webinar “Genetic dystonia and treatment””

2 February 2021 | EJP RD webinar on Joint Transnational Call 2021 on “Social Sciences and Humanities Research to Improve Health Care Implementation and Everyday Life of People Living with a Rare Disease”

Continue reading “2 February 2021 | EJP RD webinar on Joint Transnational Call 2021 on “Social Sciences and Humanities Research to Improve Health Care Implementation and Everyday Life of People Living with a Rare Disease””

28 January 2021 | Webinar “COVID-19 and Rare Diseases”

Continue reading “28 January 2021 | Webinar “COVID-19 and Rare Diseases””

EJP RD research training workshop – call open

Continue reading “EJP RD research training workshop – call open”

EURORDIS Leadership School – applications open

Continue reading “EURORDIS Leadership School – applications open”

26 January 2021 | ERN-RND webinar “Progressive Supranuclear Palsy – Update on Diagnostics, Biomarkers and Therapies”

Continue reading “26 January 2021 | ERN-RND webinar “Progressive Supranuclear Palsy – Update on Diagnostics, Biomarkers and Therapies””

25 January 2021 | EJP RD Information/Networking event

Continue reading “25 January 2021 | EJP RD Information/Networking event”

18 January 2021 | International AHC (Alternating Hemiplegia of Childhood) Day

Continue reading “18 January 2021 | International AHC (Alternating Hemiplegia of Childhood) Day”

13-15 January 2021 | IRDiRC Conference and RE(ACT) Congress

Continue reading “13-15 January 2021 | IRDiRC Conference and RE(ACT) Congress”

Review article: “The European Reference Network for Rare Neurological Diseases”

Continue reading “Review article: “The European Reference Network for Rare Neurological Diseases””

Research article: “Lower urinary tract and bowel dysfunction in spinocerebellar ataxias”

Continue reading “Research article: “Lower urinary tract and bowel dysfunction in spinocerebellar ataxias””

Author: ERN-RND

28 February 2021 | Rare Disease Day

New leaflet for patients on Muscle tightness & stiffness – “spasticity” in ataxia

ERN-RND recorded webinar: “Improving care for rare disease patients in Europe – Rare Disease Day 2021”

“Der Weg zur europaweiten Zusammenarbeit” von Holm Graessner

24 February 2021 | EURORDIS Black Pearl Awards

26 February 2021 | Tag der Seltenen Erkrankungen in Mainz

23 February 2021 | ERN-RND webinar “Improving care for rare disease patients in Europe – Rare Disease Day 2021”

23 February 2021 | Rare 2030 Final Policy Conference

ERN-RND recorded webinar: “Rare Disease Natural History Studies: Experience from the GNAO1 Natural History study in a pre and postpandemic world”

ERN-RND recorded webinar: “Progressive Supranuclear Palsy – Update on Diagnostics, Biomarkers and Therapies”

15 February 2021 | Online workshop “Good practice nelle Reti di Riferimento Europee”

Research article: “Novel instructionless eye tracking tasks identify emotion recognition deficits in frontotemporal dementia”

9 February 2021 | ERN-RND webinar “Rare Disease Natural History Studies: Experience from the GNAO1 Natural History study in a pre and postpandemic world”

Case report: “Video Case Report: Action Myoclonus After CAR-T Cell Therapy”

Rare Disease Day 2021 video

New ERN-RND project manager

New ERN-RND CPMS helpdesk

Brief report: “Development of SARAhome, a New Video‐Based Tool for the Assessment of Ataxia at Home”

ERN-RND February 2021 Newsletter

2 February 2021 | ERN-RND webinar “Genetic dystonia and treatment”

2 February 2021 | EJP RD webinar on Joint Transnational Call 2021 on “Social Sciences and Humanities Research to Improve Health Care Implementation and Everyday Life of People Living with a Rare Disease”

28 January 2021 | Webinar “COVID-19 and Rare Diseases”

EJP RD research training workshop – call open

EURORDIS Leadership School – applications open

26 January 2021 | ERN-RND webinar “Progressive Supranuclear Palsy – Update on Diagnostics, Biomarkers and Therapies”

25 January 2021 | EJP RD Information/Networking event

18 January 2021 | International AHC (Alternating Hemiplegia of Childhood) Day

13-15 January 2021 | IRDiRC Conference and RE(ACT) Congress

Review article: “The European Reference Network for Rare Neurological Diseases”

Research article: “Lower urinary tract and bowel dysfunction in spinocerebellar ataxias”