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. English language: OCCUPATIONAL THERAPY OCCUPATIONAL THERAPY CLINICAL TIPS FOR HUNTINGTON’S DISEASE – Social and Leisure by UK HD special interest group for occupational therapists (EHDN/Huntington’s Disease Association) OCCUPATIONAL THERAPY CLINICAL TIPS … 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: wim.vandenberghe@uzleuven.be Czech Republic General University Hospital Prague Contact: Dr Jiri Klempir Phone: +420 2 2496 5550 Email: jiri.klempir@seznam.cz 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: elodie.petit@icm-institute.org … 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 on care of chorea & huntington’s disease. Information and knowledge that has been developed or endorsed by ERN-RND is found in the blue boxes. Full definition of Huntington’s disease Centres and contact details for Chorea & Huntington’s disease

Welcome to ERN-RND

Welcome to ERN-RND your network for Rare Neurological Diseases in Europe The ERN-RND is a European Reference Network established by the EU to support patients and families affected by rare neurological diseases (RND) which requires much specialised knowledge, treatment and resources. Some diseases are so rare that the necessary knowledge might not be available in … Continue reading “Welcome to ERN-RND”

ERN-RND expert centres in Paris

University Hospital Henri Mondor, National Reference Centre for Huntington’s Disease, France Pitié-Salpêtrière Hospital, National Reference Centre « Neurogenetics », Paris, France

Meet the members: Astri Arnesen

In this edition of “Meet the members”, we interview Astri Arnesen, ERN-RND ePAG representative and president of the European Huntington Association. She will tell us more about her work within ERN-RND and her expectations for the network. 1. What is your profession (department, affiliation, etc.) and your medical expertise or specific field of interest? I … Continue reading “Meet the members: Astri Arnesen”