Survey on currently available education and training resources for professionals and families
Data presented are based on a survey that was created and sent to all HCPs of ERN-RND. The survey was responded by 23 HCPS. The results of the survey in the context of the available education and training resources are the following:
- Most of the HCPs do not have mandatory selectable graduate course on rare diseases for students of a university of medical sciences in the field of rare neurological disorders. Five HCPS are running mandatory courses on rare disorders but in broader scope. Seven of the HCPs have facultative course on rare neurological disorders.
Do you have mandatory selectable graduate courses on rare diseases for students of medical sciences in the field of rare neurological disorders?
- Clinical fellowship training programs in the field of rare neurological disorders are running 65.5% of the HCPPs of ERN- RND and 31% believes that it would be useful.
Do you have a clinical fellowship training program for clinicians which includes training in the field of rare neurological disorders?
- About 76% of the responders are organizing training program for diagnostics of rare neurological disorders
Do you organize a training program for the diagnostics of rare neurological disorders?
- Regarding the therapeutic fields more than 75% of the responders have courses on BOTOX treatment and on deep brain stimulation, 23.1 % on neuromodulation, 15.4% on haemopoetic stem cell transplantation and on gene therapy, respectively.
Do you have courses in the following therapeutic fields?
- Only 13.8 % of the responding HCPs offer training program for nurses in the field of rare neurological disorders.
Do you have a special training program for nurses working in the field rare neurological disorders?
- Only very limited number of HCPs has courses about the health economic aspects of rare neurological disorders.
Do you have courses in health-economic aspects of rare neurological disorders?
- 58,6% of the HCPs are focusing on courses about translational neuroscience
Do you have courses focusing on translational neuroscience?
- 48,3% of the HCPs offer multidisciplinary education courses/programs
Do you have multidisciplinary education courses/programs that address management of rare neurological disorders?
Website of the National Ataxia Foundation USA: A lot of useful information on the disease, research etc.
Website of euro-Ataxia, a European non-profit association whose member organisations work together to give people with hereditary ataxia as normal a life as possible
Members of euro-Ataxia (websites in different languages)
Website of Ataxia UK, the leading national charity in the UK for people affected by any type of ataxia. Ataxia UK fund research into finding treatments and cures, offer advice, information and support.
ADCA Vereniging Netherlands (information in Dutch)
Blog of our ePAG Cathalijne van Doorne, Info on dominant ataxia (symptoms, research, general info) (mostly in Dutch) (some research articles in English)
Website of the Friedreich’s Ataxia Research Alliance, American website
Website of Friedreich Ataxia Research Association, Australian website
Website of the Friedreich’s Ataxia Research Alliance Ireland
Website of the L’Association Française de l’Ataxie de Friedreich (in French)
Website of the Friedreich Ataxie Förderverein e.V. (in German)
Website of the Swedish FA organization (in Swedisch)
Website of the Association suisse de l’Ataxie de Friedreich (in French)
Website of the Ataxia teleangiectasia society, UK based (in English)
Huntington and Choreas:
Website of the European Huntington’s Disease Network (EHDN)
Website of the European Huntington Organisation, resource about the importance and benefit of physical activity – the resource is developed by the working group of EHDN
Website explaning news of Huntington research for lay people, patient and family oriented webpage with research news and information (different languages).