ERN-RND – Page 7 – ERN-RND | European Reference Network on Rare Neurological Diseases

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

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”

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

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””

Virtual Meeting on How to Improve Access to Care for Huntington Families – recording available

Continue reading “Virtual Meeting on How to Improve Access to Care for Huntington Families – recording available”

Review article: “Hypomyelinating leukodystrophies — unravelling myelin biology”

Continue reading “Review article: “Hypomyelinating leukodystrophies — unravelling myelin biology””

Research article: “Endocrine and Growth Abnormalities in 4H Leukodystrophy Caused by Variants in POLR3A, POLR3B, and POLR1C”

Continue reading “Research article: “Endocrine and Growth Abnormalities in 4H Leukodystrophy Caused by Variants in POLR3A, POLR3B, and POLR1C””

Registration and abstract submission for the EAN Congress 2021 are open

Continue reading “Registration and abstract submission for the EAN Congress 2021 are open”

Research article: “Apathy in presymptomatic genetic frontotemporal dementia predicts cognitive decline and is driven by structural brain changes”

Continue reading “Research article: “Apathy in presymptomatic genetic frontotemporal dementia predicts cognitive decline and is driven by structural brain changes””

No deal Brexit could have detrimental impact for four million people in UK living with a rare disease

Continue reading “No deal Brexit could have detrimental impact for four million people in UK living with a rare disease”

Author: ERN-RND

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”

Virtual Meeting on How to Improve Access to Care for Huntington Families – recording available

Review article: “Hypomyelinating leukodystrophies — unravelling myelin biology”

Research article: “Endocrine and Growth Abnormalities in 4H Leukodystrophy Caused by Variants in POLR3A, POLR3B, and POLR1C”

Registration and abstract submission for the EAN Congress 2021 are open

Research article: “Apathy in presymptomatic genetic frontotemporal dementia predicts cognitive decline and is driven by structural brain changes”

No deal Brexit could have detrimental impact for four million people in UK living with a rare disease