July 2023
Dear readers,

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


    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!

    MLD Treatment Eligibility Panels in ERN-RND

    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?
    Please contact us.

    ERN-RND Webinars

    Upcoming joint educational webinars
    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

    Webinars by Ataxia Global Initiative

    Interested in ataxia research? Register now for AGI second webinar series:

    iScience: AGI YII Webinar Series on Hot Topics
    Explore Your Future in Ataxia Research

    Clinical scales for ataxia: current state and ongoing developments
    Speaker: Thomas Klockgether (Bonn, Germany) - WG1: Clinical outcomes and registries
    Tuesday, 11 July 2023, 3-4 pm CEST

    Deep-Learning in NeuroImaging
    Speaker: Martin Reuter (DZNE Bonn, Germany) - WG3: MRI Biomarkers
    Monday, 17 July 2023, 3-4 pm CEST

    Repeat-expansions in ataxias: direct sequencing, detection by short-read WES/WGS vs. long-read WGS, and novel forms
    Speakers: Matthis Synofzik (Tübingen, Germany), Stephan Zuchner (Miami, USA), Matt Danzi (Miami, USA), Brent Fogel (Los Angeles, USA), David Pellerin (London, UK) - WG6: Next-generation genomics and platforms
    Tuesday, 12 September 2023, 8 pm CEST

    Quantative Gait and Balance Outcomes for Ataxia Trials
    Speakers: Fay Horak (Oregon Health and Science University, USA); Winfried Ilg (University of Tuebingen, Germany) - WG4 Digital-motor biomarkers
    Tuesday, 19 September 2023, 5-6pm CEST

    Future Projects for Biomarker Group
    Speakers: Filippo Santorelli (Pisa, Italy), David Mengel (Tübingen, Germany), Puneet Opal (Chicago, USA) - WG2 Molecular biomarkers & biosampling
    Tuesday, 24 October 2023, 5-6 pm CEST

    Neuropathies Rehabilitation Summer School

    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.

    18th International GEoPD Meeting

    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 here or by emailing
    Thank you for your support and take care.

    Kind regards,
    ERN-RND Coordination team
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