We wish you all a joyful and relaxing summer break! Please note that there will be no newsletter in August. We are looking forward to reconnecting in September.
Best wishes,
The ERN-RND Coordination team
Content
ERN-RND Annual Meeting
MLD Treatment Eligibility Panels in ERN-RND
ERN-RND Webinars
Webinars by Ataxia Global Initiative
Neuropathies Rehabilitation Summer School
18th International GEoPD Meeting
ERN-RND Annual Meeting
We are happy to announce that this year’s ERN-RND annual meeting, Care-RND23, is open for online participation to anyone interested! Please note that the onsite participation is for ERN-RND members only.
Register for free online participation below. We are looking forward to presenting and discussing the latest ERN-RND-related updates with you!
In cooperation with the MLD initiative, ERN-RND established a standard pathway for consulting an international MLD expert panel whenever possible benefits of treatment with hematopoietic stem cell transplantation or gene therapy are not straightforward for a patient with confirmed MLD diagnosis. Upon submission of an eligible case, the treatment eligibility panel is convened on an ad hoc basis, organized and supported by the ERN-RND CPMS helpdesk.
We encourage all physicians in Europe to discuss the possible benefits of treatment options for difficult cases with this MLD expert panel.
You would like to discuss one of your patients with the panel?
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 neuromuscular disorders via a series of webinars presented by expert members of both networks.
12.09.2023, 3-4 pm CET| ‘Friedreich Ataxia’ by Kathrin Reetz, RWTH-University Hospital Aachen, Germany. SIGN UP here
26.09.2023, 3-4 pm CET| ‘Neuropsychological assessment in primary progressive aphasia – recommendations and pitfalls in clinical practice’ by Lize Jiskoot, Erasmus Medical Center Rotterdam, Netherlands. SIGN UP here
The Neuropathies Rehabilitation Summer School by ERN EURO-NMD is a specialized event designed for physiotherapists, occupational therapists, clinicians with an interest in neuromuscular diseases, clinicians specializing in rehabilitation medicine, and patient advocacy groups.
The primary objective of this summer school is to disseminate knowledge about current and future modalities of rehabilitation in rare and complex neuropathies. The Neuropathies Rehabilitation Summer School will take place from September 18-21, 2023 in Hotel Excel Roma Montemario, Rome, Italy.
The event aims to educate clinicians, researchers, physiotherapists, and patient advocacy groups working in the field of rehabilitation and neuromuscular diseases. The program covers a wide range of topics, including the basics of rehabilitation for peripheral neuropathies, new trends in rehabilitation medicine, innovative technological rehabilitation, and telerehabilitation. It also focuses on rehabilitation applied to specific peripheral neuropathies, emphasizing disease-specific sessions.
The Genetic Epidemiology of Parkinson's Disease consortium is pleased to announce the 18th international GEoPD meeting in Antwerp, Belgium on 30th and 31rst October 2023.
The ERN-RND Newsletter is published monthly. Please forward this newsletter to your colleagues who can also sign up to receive it directly hereor by emailing
