ERN-RND | European Reference Network on Rare Neurological Diseases
for rare or low prevalence complex diseases
I viaggi del paziente sono panoramiche infografiche che visualizzano le esigenze dei pazienti nella cura della loro malattia rara. Poiché i viaggi del paziente sono progettati dal punto di vista del paziente, consentono ai medici di rispondere efficacemente alle esigenze dei pazienti affetti da malattie rare. I viaggi del paziente tengono conto del fatto che … Continue reading “Viaggio del paziente – Malattia di Huntington (MH)”
Los Trayectos del Paciente/Patient Journeys son panoramas infográficos que visualizan las necesidades de los pacientes en el cuidado de su enfermedad rara. Dado que los Patient Journeys están diseñados desde la perspectiva del paciente, permiten a los médicos abordar eficazmente las necesidades de los pacientes con enfermedades raras. Los Patient Journeys tienen en cuenta que … Continue reading “Trayecto del paciente – Enfermedad de Huntington (EH)”
Les parcours du patient sont des aperçus info-graphiques qui permettent de visualiser les besoins des patients dans le cadre du traitement de leur maladie rare. Comme les parcours du patient ont été conçus du point de vue du patient, ils permettent aux médecins de répondre efficacement aux besoins des patients atteints de maladies rares. Les … Continue reading “Parcours du Patient – Maladie de Huntington (MH)”
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 mit seltenen Krankheiten einzugehen. Die Patientenreisen berücksichtigen, dass die Bedürfnisse der Patienten in verschiedenen Stadien der Krankheit unterschiedlich … Continue reading “Patientenreise – Chorea Huntington (HD)”
As Jornadas do Doente são sínteses info-gráficas que visualizam as necessidades dos doentes no tratamento da sua doença rara. Uma vez que as Jornadas do Doente são concebidas a partir da perspetiva do doente, permitem aos médicos responder eficazmente às necessidades das pessoas com doenças raras. Os Percursos do Doente consideram que as necessidades dos … Continue reading “Percurso do Doente – Doença de Huntington”
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”
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. Advocacy for Neuroacanthocytosis Patients Neuroacanthocytosis (NA syndromes) refers to 2 genetic disorders (chorea-acanthocytosis and McLeod syndrome) characterised by misshapen, spiny red blood cells (acanthocytosis) and neurological abnormalities, particularly movement disorders. The … Continue reading “Patient information – Chorea & Huntington’s disease – Adult”
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): Disease specific patient education handouts on Huntington’s disease by the Movement Disorders Society English language: NUTRITION Huntington disease, principles and practice of nutritional management by Jiří Klempíř and … Continue reading “Patient information – Chorea & Huntington’s disease – Adult & Paediatric”
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.
Consensus papers and best practice Information page by the NHS Evidence Burgunder, J.-M. (2013). Recent advances in the management of choreas. Therapeutic Advances in Neurological Disorders, 6(2), 117–127. doi:10.1177/1756285612471700 Treatment approach for HD Books “Huntington… et alors? Comprendre la maladie et vivre avec” Videos “What is Huntington’s Disease” is an educational video and testimonial from UCL … Continue reading “Useful links, training resources, evidence and publication – Chorea & Huntington’s disease”
European Huntington’s Association is the European umbrella organisation for HD patient organisations: European Huntington’s Association European Huntington’s Association includes national patient organisations from all over Europe which currently include the following: Members of the Europe Huntington’s Association listed per country
REGISTRY 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: Obtain natural history data on a wide spectrum of individuals affected by HD Relate … Continue reading “Registries – Chorea & Huntington’s disease”
Belgium University Hospitals Leuven Contact: Prof. Wim Vandenberghe Phone: +3216344280 Email: Czech Republic General University Hospital Prague Contact: Dr Jiri Klempir Phone: +420 2 2496 5550 Email: France Assistance Publique-Hôpitaux de Paris, Hôpital Pitié-Salepétrière Contact: Prof. Alexandra DURR Phone: +33 (0)1 42 16 1346 or +33 (0)1 57 27 45 31 Email: … Continue reading “ERN-RND centres – 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 Chorea & Huntington’s Disease Disease Knowledge Page provides reference information about care of Chorea & huntington’s Disease. Information and knowledge that has been developed or endorsed by ERN-RND is found in blue boxes. Full definition of Huntington’s Disease Centres for Chorea & Huntington’s Disease and their contact details
As Jornadas do Doente são sínteses info-gráficas que visualizam as necessidades dos doentes na gestão da sua doença rara. Uma vez que as Jornadas do Doente são desenvolvidas a partir da perspetiva do doente, permitem aos médicos responder eficazmente às necessidades dos doentes com doenças raras. Os Percursos do Doente têm em conta o facto … Continue reading “Percurso do doente – Paraplegia Espastica Hereditaria (PEH)”
