ERN-RND | European Reference Network on Rare Neurological Diseases
for rare or low prevalence complex diseases
Explanatory Video by clicking the link you accept YouTube’s privacy policy. Podcast 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 … Continue reading “ERN-RND Patient Journeys”
Los Recorridos del Patiente son panoramas infográficos que visualizan las necesidades de los pacientes en el cuidado de su enfermedad rara. Dado que los Recorridos del Patiente están diseñados desde la perspectiva del paciente, permiten a los médicos abordar eficazmente las necesidades de los pacientes con enfermedades raras. Los Recorridos del Patiente tienen en cuenta … Continue reading “Recorrido del Paciente – Ataxia de Friedreich (AF)”
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. Disease specific patient education handouts by the Movement Disorders Society ______________________________________ ______________________________________ ______________________________________ ______________________________________ ______________________________________
Management of the ataxias: towards best clinical practice Summary of primary care by Ataxia UK Consensus clinical management guidelines for Friedreich’s Ataxia Translated to French: Consensus guide clinique pour la prise en charge de l’Ataxie de Friedreich Translated to German: Beste klinische Praxis für das Management von Ataxien Consensus Guideline für Klinisches Management der Friedreich’s … Continue reading “Care Standards – Affirmed Guidelines – Ataxia”
The Cerebellar Ataxia & Hereditary Spastic Paraplegias Disease Knowledge Page provides reference information on care of cerebellar ataxia and hereditary spastic paraplegias. Information and knowledge that has been developed or endorsed by ERN-RND is found in the blue boxes.