15-16-17 June 2020 | ERN-RND (virtual) Annual Meeting Continue reading “15-16-17 June 2020 | ERN-RND (virtual) Annual Meeting”
16 June 2020 | Webinar “Advancing the rare disease research agenda” Continue reading “16 June 2020 | Webinar “Advancing the rare disease research agenda””
6-9 June 2020 | ESHG 2020.2 – Live in your living room Continue reading “6-9 June 2020 | ESHG 2020.2 – Live in your living room”
9 June 2020 | Webinar “The impact of COVID 19 for people living with a Rare Disease” by EC & EURORDIS Continue reading “9 June 2020 | Webinar “The impact of COVID 19 for people living with a Rare Disease” by EC & EURORDIS”
ERN-RND June Newsletter 2020 – CORRECTION Continue reading “ERN-RND June Newsletter 2020 – CORRECTION”
EJP RD fellowship awarded to ERN-RND member Continue reading “EJP RD fellowship awarded to ERN-RND member”
Research article: “Disease Progression and Prognostic Factors in Multiple System Atrophy: A Prospective Cohort Study” Continue reading “Research article: “Disease Progression and Prognostic Factors in Multiple System Atrophy: A Prospective Cohort Study””
Research article: “Awareness of rare and genetic neurological diseases among italian neurologist. A national survey” Continue reading “Research article: “Awareness of rare and genetic neurological diseases among italian neurologist. A national survey””
EFNA position paper on patient involvement in research Continue reading “EFNA position paper on patient involvement in research”
23-26 May 2020 | 6th (Virtual) Congress of the European Academy of Neurology Continue reading “23-26 May 2020 | 6th (Virtual) Congress of the European Academy of Neurology”
26 May 2020 | ERN-RND webinar “Primary progressive aphasia subtyping in clinical practice” Continue reading “26 May 2020 | ERN-RND webinar “Primary progressive aphasia subtyping in clinical practice””
EJP RD Networking Support Scheme (NSS) open Continue reading “EJP RD Networking Support Scheme (NSS) open”
ERN-RND at EAN congress on 22-26 May 2020 Continue reading “ERN-RND at EAN congress on 22-26 May 2020”
14-15 May 2020 | 10th European Conference on Rare Diseases & Orphan Products (ECRD2020) Continue reading “14-15 May 2020 | 10th European Conference on Rare Diseases & Orphan Products (ECRD2020)”
Livre: “Huntington…et alors? Comprendre la maladie et vivre avec” Continue reading “Livre: “Huntington…et alors? Comprendre la maladie et vivre avec””
12 May 2020 | ERN-RND webinar “paroxysmal dyskinesias: update on clinical and genetic aspects” Continue reading “12 May 2020 | ERN-RND webinar “paroxysmal dyskinesias: update on clinical and genetic aspects””
NEW! research article: “Management of rare movement disorders in Europe: outcome of surveys of ERN-RND” Continue reading “NEW! research article: “Management of rare movement disorders in Europe: outcome of surveys of ERN-RND””
May is Huntington’s Disease Awareness Month Continue reading “May is Huntington’s Disease Awareness Month”
Research article: “Cerebrospinal Fluid YKL-40 and Chitotriosidase Levels in Frontotemporal Dementia Vary by Clinical, Genetic and Pathological Subtype” Continue reading “Research article: “Cerebrospinal Fluid YKL-40 and Chitotriosidase Levels in Frontotemporal Dementia Vary by Clinical, Genetic and Pathological Subtype””
Research article: “Teaching Video NeuroImages: Palatal tremor associated with SPG7 variants” Continue reading “Research article: “Teaching Video NeuroImages: Palatal tremor associated with SPG7 variants””
27-29 April 2020 | ‘Training on strategies to foster solutions of undiagnosed rare disease cases’ Continue reading “27-29 April 2020 | ‘Training on strategies to foster solutions of undiagnosed rare disease cases’”
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””