29 April | Share4Rare webinar: “State of the Art of Rare Disease Activities in Europe” Continue reading “29 April | Share4Rare webinar: “State of the Art of Rare Disease Activities in Europe””
Rare Barometer survey on rare disease patients’ experience of COVID-19 Continue reading “Rare Barometer survey on rare disease patients’ experience of COVID-19”
Research article: “Longitudinal dynamics of mutant huntingtin and neurofilament light in Huntington’s disease: the prospective HD-CSF study” Continue reading “Research article: “Longitudinal dynamics of mutant huntingtin and neurofilament light in Huntington’s disease: the prospective HD-CSF study””
Research article: “Driving Performance in Patients With Idiopathic Cervical Dystonia; A Driving Simulator Pilot Study” Continue reading “Research article: “Driving Performance in Patients With Idiopathic Cervical Dystonia; A Driving Simulator Pilot Study””
23 April 2020 | EURO-NMD webinar “exercise & NMD” Continue reading “23 April 2020 | EURO-NMD webinar “exercise & NMD””
21 April 2020 | ERN-RND webinar “hypomyelination” Continue reading “21 April 2020 | ERN-RND webinar “hypomyelination””
14 April 2020 | ERN-RND webinar “recognizing atypical parkinsonism” Continue reading “14 April 2020 | ERN-RND webinar “recognizing atypical parkinsonism””
EAN Movement Disorders Scientific Panel recommendations for COVID-19 pandemic Continue reading “EAN Movement Disorders Scientific Panel recommendations for COVID-19 pandemic”
Dystonia, patient advocacy and the future by Monika Benson Continue reading “Dystonia, patient advocacy and the future by Monika Benson”
Recording of webinar on Huntington’s disease & COVID-19 available Continue reading “Recording of webinar on Huntington’s disease & COVID-19 available”
6-7 April 2020 | SCA Global Conference CANCELLED Continue reading “6-7 April 2020 | SCA Global Conference CANCELLED”
Guidelines on EU Emergency Assistance in Cross-border Cooperation in Healthcare Continue reading “Guidelines on EU Emergency Assistance in Cross-border Cooperation in Healthcare”
6 April 2020 | EHA & ERN-RND webinar: “Huntington’s disease and the Covid-19 pandemic – a difficult combination” Continue reading “6 April 2020 | EHA & ERN-RND webinar: “Huntington’s disease and the Covid-19 pandemic – a difficult combination””
COVID-19: EURORDIS urges immediate action and proposes concrete solutions for rare disease patients Continue reading “COVID-19: EURORDIS urges immediate action and proposes concrete solutions for rare disease patients”
Webinar on 6 April: “Huntington’s Disease & COVID-19 pandemic – a difficult combination” Continue reading “Webinar on 6 April: “Huntington’s Disease & COVID-19 pandemic – a difficult combination””
European Commission launches COVID-19 Clinical Management Support System Continue reading “European Commission launches COVID-19 Clinical Management Support System”
28-29 March 2020 | European Conference on the Diffusion of Genomic Medicine CANCELLED Continue reading “28-29 March 2020 | European Conference on the Diffusion of Genomic Medicine CANCELLED”
25-27 March 2020 | 10th International Meeting on Neuroacanthocytosis Syndromes Continue reading “25-27 March 2020 | 10th International Meeting on Neuroacanthocytosis Syndromes”
21 April 2020 | ERN-RND webinar “hypomyelination” (paediatric focus) Continue reading “21 April 2020 | ERN-RND webinar “hypomyelination” (paediatric focus)”
EFNA launches survey on stigma & neurological conditions Continue reading “EFNA launches survey on stigma & neurological conditions”
17 March 2020 | ERN-RND webinar “X-linked adrenoleukodystrophy” (adult/paediatric focus) Continue reading “17 March 2020 | ERN-RND webinar “X-linked adrenoleukodystrophy” (adult/paediatric focus)”
11-14 March 2020 | RE(ACT) Congress & IRDiRC Conference Continue reading “11-14 March 2020 | RE(ACT) Congress & IRDiRC Conference”
European Reference Networks are 3 years old Continue reading “European Reference Networks are 3 years old”
3-6 March 2020 | NAF’s Ataxia Investigators meeting – CANCELLED Continue reading “3-6 March 2020 | NAF’s Ataxia Investigators meeting – CANCELLED”