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”
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: 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”
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 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
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”
“Пътят на пациента” са информационни графики, които визуализират нуждите на пациентите при лечението на тяхното рядко заболяване. Тъй като материалите “Път на пациента” са разработени от гледна точка на пациента и неговите близки, те позволяват на лекарите ефективно да отговорят на нуждите на пациентите с редки болести. Инфографиките отчитат, че нуждите на … Continue reading “Пътят на пациента – болест на Хънтингтън”
From September 29th to October 1st the annual meeting took place at the CRONA-Kliniken in Tübingen. We are happy that besides the online participants also many on-site participants were present. We would like to thank all participants again for the inspiring presentations, discussions and the valuable exchange. Astri Arnesen, ERN-RND ePAG representative and president of … Continue reading “ERN-RND ANNUAL MEETING 2022”
In this edition of “Meet the members”, we interview Nataliya Grigorova, Bulgarian Huntington Association, ERN-RND ePAGs group coordinator. She speaks about the idea that the most important step for patients and their care is to improve their current condition and to increase their quality of life. She also speaks about her wish to foster equal … Continue reading “Meet the members: Nataliya Grigorova”
Disease-SpecificNeurorehabilitationAdvanced TherapiesPaediatricClinical StudiesDeep Brain StimulationERN-RND webinars in collaboration with ERN EURO-NMD and EAN ERN-RND provides free educational webinars on rare neurological and neuromuscular diseases – in collaboration with the European Reference Network for Rare Neuromuscular Diseases (EURO-NMD) and the European Academy of Neurology (EAN). The goal is to share knowledge on rare neurological, movement and … Continue reading “Webinars”
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 the patient’s nearest health centre or country. The patient doesn’t travel … Continue reading “Welcome to ERN-RND”
