Research article: “Research priorities for rare neurological diseases: a representative view of patient representatives and healthcare professionals from the European Reference Network for Rare Neurological Diseases” Continue reading “Research article: “Research priorities for rare neurological diseases: a representative view of patient representatives and healthcare professionals from the European Reference Network for Rare Neurological Diseases””
Article: “European Reference Networks: challenges and opportunities” Continue reading “Article: “European Reference Networks: challenges and opportunities””
Survey: educational needs in rare neurological diseases in Europe Continue reading “Survey: educational needs in rare neurological diseases in Europe”
FUNDING – EJP RD / ERN Research Mobility Fellowship call open Continue reading “FUNDING – EJP RD / ERN Research Mobility Fellowship call open”
EJP RD – ERN Research Mobility Fellowship funding opportunity Continue reading “EJP RD – ERN Research Mobility Fellowship funding opportunity”
Health Awareness Rare Disease Day 2021 campaign Continue reading “Health Awareness Rare Disease Day 2021 campaign”
New leaflet for patients on Muscle tightness & stiffness – “spasticity” in ataxia Continue reading “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” Continue reading “ERN-RND recorded webinar: “Improving care for rare disease patients in Europe – Rare Disease Day 2021””
“Der Weg zur europaweiten Zusammenarbeit” von Holm Graessner Continue reading ““Der Weg zur europaweiten Zusammenarbeit” von Holm Graessner”
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””
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” “
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””
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””
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”
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””