Patientenreise – Chorea Huntington (HD)

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)”

Patient journey – Huntington’s disease

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”

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

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. 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”

Patient information – Chorea & Huntington’s disease – Adult & Paediatric

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”

Useful links, training resources, evidence and publication – Chorea & Huntington’s disease

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”

Patient organisations – 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

Registries – Chorea & Huntington’s disease

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”

ERN-RND centres – 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”

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.

Chorea & Huntington’s disease

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

Percurso do doente – Paraplegia Espastica Hereditaria (PEH)

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)”

ERN-RND Patient Journeys

Patient Journeys are a useful educational tool for those with the rare disease. In addition, it is an ideal tool for doctors who are not experts in the area, accident and emergency, general practitioners and other health care professionals. (Mary Kearney, patient advocate at the ERN) Patient Journeys  are info-graphical overviews that visualize patients’ needs … Continue reading “ERN-RND Patient Journeys”