ERN-RND | European Reference Network on Rare Neurological Diseases
for rare or low prevalence complex diseases
Patient Journeys are info-graphical overviews that visualize patients’ needs in the care of their rare disease. Because Patient Journeys are designed from the patient’s perspective, they allow clinicians to effectively address the needs of rare disease patients. Patient Journeys consider that patients’ needs may differ at different stages of the disease – e.g., initial symptoms … Continue reading “Patient Journey – Huntington’s Disease (HD)”
Guidelines for Huntington’s disease Translated to French: Guide clinique international pour le traitement de la maladie de Huntington Translated to German: Internationale Guideline für die Behandlung der Huntington-Krankheit Translated to Spanish: Guia internacional de practica clinica para el tratamiento de la enfermedad de Huntington
Please note that this section includes useful information from a variety of sources provided by ERN-RND members but which hasn’t been endorsed by ERN-RND. Multiple languages (36): English language: NUTRITION French language:
20 Oct. 2020 Speaker: Bernhard LandwehrmeyerUniversity Hospital Ulm, Germany Recording Slides
15 Sep. 2020 Speaker: Ferdinando SquitieriIRCCS – CSS-Mendel Institute, Rome, Italy Recording Slides
May is Huntington’s Disease Awareness Month. Raise awareness by lighting up your home, sharing pictures and stories on social media. You can use the hashtag #LightItUp4HD . You can find more information on the European Huntington Association webpage’s here.
REGISTRY is a multi-centre, multi-national, European (with some associate partners wordlwide) observational study of Huntington’s disease sponsored by CHDI, a non-profit organisation that supports a variety of research projects seeking to find treatments for HD. The aims of REGISTRY are: Enroll-HD is now replacing Registry in a gobal setting, including centres in North and South … Continue reading “Registries – Chorea & Huntington’s disease”
According to the European Huntington’s Disease Network, ” Huntington’s Disease is a rare, hereditary , degenerative disorder of the brain that was first described by George Huntington”. Please find more information on the EHDN’s website.
The Dystonia, Paroxysmal Disorders & NBIA Disease Knowledge Hub provides reference information on care of Dystonias, Paroxysmal Disorders & Neurodegeneration with Brain Iron Accumulation (NBIA). Patient Journey movies To read subtitles in a specific language, please click on the gear wheel in the lower right corner of the video in full screen mode and choose … Continue reading “Dystonia, Paroxysmal Disorders & NBIA”
Ścieżka Pacjenta to graficzny przegląd informacji, które wizualizują potrzeby pacjentów w zakresie opieki nad ich rzadką chorobą. Ścieżki Pacjenta są zaprojektowane z perspektywy pacjenta i pozwalają klinicystom skutecznie zaspokajać potrzeby pacjentów z chorobami rzadkimi. Ścieżki Pacjenta uwzględniają fakt, że te potrzeby mogą się różnić na różnych etapach choroby – np. początkowe objawy vs. leczenie. Odzwierciedlają … Continue reading “Ścieżka pacjenta z rzadką chorobą neurologiczną”
As Patient Journeys são sínteses info-gráficas que visualizam as necessidades dos doentes no tratamento da sua doença rara. Uma vez que as Patient Journeys são concebidas a partir da perspetiva do doente, permitem aos médicos responder eficazmente às necessidades das pessoas com doenças raras. Os Patient Journeys consideram que as necessidades dos doentes podem ser … Continue reading “Patient Journey – Doenças Neurológicas Raras”
Пути пациента — это инфографические иллюстрации, представляющие потребности пациентов в лечении их редких заболеваний. Поскольку они разработаны с точки зрения пациента, они помогают врачам эффективно реагировать на потребности пациентов с редкими заболеваниями. В пути пациента учитывается, что потребности пациентов могут отличаться на разных стадиях заболевания — например, при первых симптомах и во время лечения. Они … Continue reading “Путь Пациента – Болезнь Гентингтона (БГ)”
Patient Journeys are info-graphical overviews that visualize patients’ needs in the care of their rare disease. Because Patient Journeys are designed from the patient’s perspective, they allow clinicians to effectively address the needs of rare disease patients. Patient Journeys consider that patients’ needs may differ at different stages of the disease – e.g., initial symptoms … Continue reading “Patient Journey – Rare Neurological Diseases (RND)”
Did you miss a session during our winter school Challenges of Treating Rare Neurological Diseases this year? You can now watch the recordings! Please find below a list of the recordings. You can also find them on our website PAST WEBINARS. Francesca Fumagalli – IRCCS San Raffaele Scientific Institute, Milan, ItalyTreatment of metachromatic leukodystrophies Caroline Sevin … Continue reading “Recordings from our Winter School 2025 are now available”
A betegutak olyan infografikus áttekintések, amelyek vizualizálják a betegek igényeit ritka betegségük ellátása során. Mivel a betegutakat a beteg szemszögéből tervezték, lehetővé teszik a klinikusok számára, hogy hatékonyan foglalkozzanak a ritka betegségben szenvedő betegek igényeivel. A betegutak figyelembe veszik, hogy a betegek szükségletei a betegség különböző szakaszaiban – pl. kezdeti tünetek vs. kezelés – eltérőek … Continue reading “Betegút – Cervikális Disztónia (CD)”
6th ERN-RND Winter School ‘Challenges of Treating Rare Neurological Diseases’, 12. – 14. March 2025 Winter School 2025 The European Pediatric Neurology Society (EPNS) and the European Reference Network for Rare Neurological Diseases (ERN-RND) are organizing a Winter School on Challenges of Treating Rare Neurological Diseases. The school will take place virtually, from 12th to … Continue reading “Winter School”
