Search Results for: huntington

Patientenreise – Huntington-Krankheit (HK)

Patientenreisen sind infografische Übersichten, die die Bedürfnisse der Patienten bei der Behandlung ihrer seltenen Krankheit visualisieren. Da die Patientenreise aus der Perspektive des Patienten entwickelt wurden, ermöglichen sie es den Ärzten, effektiv auf die Bedürfnisse der Patienten und Patientinnen mit seltenen Krankheiten einzugehen. Die Patientenreisen berücksichtigen, dass die Bedürfnisse der Patienten in verschiedenen Stadien der … Continue reading “Patientenreise – Huntington-Krankheit (HK)”

Patient Journey – Huntington’s Disease (HD)

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)”

Care standards – Guidelines – Chorea & Huntington’s disease

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

Registries – Chorea & Huntington’s disease

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”

Definition – 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.

Support Package for Patients

Just got diagnosed with Huntington Ataxia HSP FTD MSA CD LKD Learn more about Huntington Ataxia HSP FTD MSA CD LKD

Scientific Symposium “Registries for RND”

Interested in Registries for Rare Neurological Diseases? Then join our Scientific Symposium on October 10 – online and free of charge! To register click here. PROGRAMME Session 1: Framework for RND Registries TIME (CET) TOPIC SPEAKER 08:00 Welcome and overview ofERN-RND activities Holm Graessner / Ludger Schöls / symposium chairs 08:05 —– KEYNOTE —-Why Registries … Continue reading “Scientific Symposium “Registries for RND””

ERN-RND Postgraduate Curriculum launched

We are proud to present the first UEMS approved medical training on Rare Neurological Diseases, which we’ve launched during this year’s EAN Congress on June 28: our ERN-RND Postgraduate Curriculum! The curriculum is divided into three parts: We are starting now with the first module on Ataxias and Hereditary Spastic Paraplegias with 33 webinars and … Continue reading “ERN-RND Postgraduate Curriculum launched”