are you at this year's EAN Congress in Geneva? Then come and visit us at our booth (N31) in the Neurohood! And don't miss our talk by Holm Graessner on our new postgraduate curriculum (see below).
What's new this month? We havetwo new translations of the Huntington’s Disease Patient Journey (Slovenian, Norwegian), a personal Patient Journey story from ePAG Ruth Blanco, and reflections from our ePAGs following their visit to Motol University Hospital in Prague (see below). We also want to highlight two webinar series: ERDERA’s Diagnostic Research Workstream webinars and EURORDIS’ webinar series on transition from paediatric to adult care.
And as always you will find information on our upcoming webinars and further events. Enjoy reading!
Best wishes, The ERN-RND Coordination team
CONTENT
About us Disease Knowledge ERN-RND Webinars Cross-border Healthcare ERDERA Webinar Series - Diagnostic Research Workstream EURORDIS Webinar Series - Transition in Healthcare Upcoming Events
ABOUT US
#MeetUs at EAN 2026!
Are you at this year's EAN Congress in Geneva? Then come and visit us at our booth (N31) in the Neurohood- the ERNs EURO-NMD, epiCARE and EFNA, the European umbrella organisation of neurological patient advocacy groups, will also be there!
And don't miss our talk on our new postgraduate curriculum by Holm Graessner!
Like every year our ePAGs visit one of our expert centers to learn more about their work and how they organize care for patients with rare neurological diseases. This year, on 4 June 2026, seven of us — along with our project manager and communications manager — found ourselves in the beautiful city of Prague at Motol University Hospital. This visit was made possible through Julie Nováková Martínková, ERN-RND Disease Group coordinator for Frontotemporal Dementia (FTD) and clinician at Motol as well as Martin Vyhnalek, associate professor at Motol, who generously helped organize the exchange. What impressed us most was the excellent national awareness of this center: They educate neurologists across the country, enabling rapid expert consultation—within just two months. The pediatric and adult teams meet regularly, ensuring a smooth transition to adult care.
As patient representatives in ERN-RND, our main objective was to understand how ERN membership integrates into their clinical practice.
Motol is the only national reference center for ataxias and HSPs (Hereditary Spastic Paraplegias) in the Czech Republic, actively following more than 500 patients with these conditions. They also serve as one of three national expert centers for FTD. Notably, they have introduced a new Care Coordinator role that bridges the expert center with local facilities—a model that strengthens their reach and improves continuity of care.
The meeting began with a comprehensive presentation from the hospital team, followed by a tour of the laboratory and neurology department, where we learned about the diagnostic tools they use for early detection, enabling faster and more accurate diagnoses.
The most engaging and memorable part of our visit was an interactive session with the speech therapists, whose role in neurology is critical. They explained that their work extends far beyond speech to include non-verbal communication and dysphagia management. They demonstrated practical exercises used with patients, inviting us to participate. We blew bubbles to strengthen our vocal cords and practiced the Mendelsohn and Masako maneuvers—targeted swallowing exercises designed to strengthen throat muscles, improve coordination, and prevent aspiration. This hands-on experience gave us profound insight into the daily work of rehabilitation and the dedication required to support patients with these conditions.
In attendance were hospital clinicians and two patient representatives: Tomáš Pick, representing ataxia patients, and Jakub Šunek, who is in the early stages of developing the first HSP patient organization in the Czech Republic. Their inclusion demonstrates this center's genuine commitment to patient-centered care and collaborative decision-making—a sign that they truly care about and are invested in helping their patients.
Particularly exciting is the opportunity to continue working with Jakub. As an advisor to EuroHSP, I will be connecting him with the organization as he builds the Czech HSP patient community. This collaboration could significantly strengthen support for HSP patients in the region and represents the kind of international partnership that ERN membership enables.
The team identified important opportunities for improvement. A critical barrier emerged: lack of awareness among policymakers and healthcare systems about rare diseases and what specialized care they require. Without this foundational understanding, ERN expertise and the time-intensive consultations that save lives remain undervalued and underfunded. With sustainable support for ERN activities and better recognition of these complex consultations, they would be able to expand their team and hire additional coordinators and administrative staff.
Yet our dialogue confirmed what became clear throughout the visit: we share common goals. We work on the same challenges from different perspectives—challenges that ultimately require the attention of politicians and governmental departments. This visit reinforced that patient voices, clinical expertise, and policy advocacy must work together to create real change for people living with rare neurological diseases.
Lori Renna Linton (collaborative writing with the ePAGs)
DISEASE KNOWLEDGE
NEW Patient Journey Video on Huntington's Disease
"When I was 15 years old, I remember my father had started to act strangely. He was very apathetic, had mood swifts, was aggressive and had many obsessions." This is what our patient advocate Ruth Blanco recalls when she looks back on the time when the first symptoms of Huntington's disease (HD) appeared — though at the time, no one realized they were related to the disease.” Having a document like our Patient Journey for Huntington's Disease would have been a great support back then - and is still today.
Watch our new patient journey video (available also in Spanish) and help us spread the word. By sharing it, you can help more people discover our Patient Journey documents and access valuable information to support them throughout their healthcare journey.
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.
11.06.2026,4-5 pm CET | ‘Amyloid neuropathies/therapeutic approaches’ by Andoni Echaniz-Laguna, Université Paris-Saclay – Assistance Publique – Hôpitaux de Paris (AP-HP) Bicêtre Hospital). SIGN UP here. (EURO-NMD)
16.06.2026, 3-4 pm CET |‘Neuro-opthalmological presentations of ataxia and other rare neurological disorders’, byTatiana Brémovà-Ertl, Center for rare diseases, University Hospital Bern. SIGN UP here.(ERN-RND)
18.06.2026,4-5 pm CET | ‘Skin biopsy for small fibers neuropathy’ by Grazia Devigili, IRCCS Foundation Carlo Besta Neurological Institute, Milan, Italy. SIGN UP here. (EURO-NMD)
23.06.2026, 3-4 pm CET | ‘Palliative care in adult patients with neuromuscular and other rare neurological disorders’, by Marianne de Visser, Amsterdam University Medical Center, The Netherlands. SIGN UP here.(ERN-RND)
30.06.2026, 3-4 pm CET | ‘Friedreich Ataxia’, by Kathrin Reetz, RWTH-University Hospital Aachen, Germany. SIGN UP here.(ERN-RND)
14.07.2026, 3-4 pm CET | ‘Palliative Care for Children and Adolescents with Severe Neurological Impairment (e.g. NBIA)’, by Martin Staudt, Ludwig Maximilian University Hospital, Munich, Germany. SIGN UP here.(ERN-RND)
15.09.2026, 3-4 pm CET |‘Diagnostics and Treatment of Dystonia’, by Dénes Zádori, Department of Neurology, University of Szeged. SIGN UP here.(ERN-RND)
eanCampus
eanCampus offers monthly webinars, 2 master classes per year and weekly podcasts on 3 expert levels (basic, advanced, expert), in total more than 1000 pieces.
September, tba pm CEST | ‘Migraine During Pregnancy, Postpartum and Breastfeeding: Understanding the Hormonal Aspect and Implementing Safe Strategies for Acute and Preventive Treatment ’. More information here.
October, tba pm CEST | ‘Dementia and Cognitive Disorders’. More information here.
Huntington Academy
Free Courses for Healthcare Professionals, Caregivers & Family Members
The Huntington Academy is a multinational, multilingual initiative designed to address the significant gaps in care provision for families impacted by Huntington’s disease (HD). Its mission is to empower the HD community through knowledge, skills, and collaborative learning, fostering improved care, advocacy, and quality of life.
It is an innovative and comprehensive e-learning platform designed to provide accessible and high-quality educational resources for both formal (healthcare professionals) and informal (family members and friends) caregivers of individuals affected by HD. The Huntington Academy contents are available in four languages – Bulgarian, English, French and Spanish.
The platform includes two transversal core courses — “What is HD? (HD basics)” and “Communication Skills in HD Care” — and seven domain-specific courses covering key disciplines in HD care (Neurology, Psychology, Nutrition, Physiotherapy, Speech Therapy, Occupational Therapy and Oral Care).
All the Huntington Academy contents were jointly created by patient organizations, family members and healthcare professionals from the countries involved in the consortium.
Ataxia Global Initiative launched a new webinar series focusing on preventive trials in the spinocerebellar ataxias (SCAs) — a developing area in ataxia research.
Preventive approaches build on recent progress in understanding pre-ataxic disease stages and early biomarkers, representing the next step toward earlier intervention. This concept has already been explored in other neurodegenerative diseases, and the series aims to translate these insights to SCAs. See the full programhere.
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?
Online Multidisciplinary Board for Deep Brain Stimulation in Dystonia
ERN-RND has established a standard pathway for providing multidisciplinary expert recommendations concerning Deep Brain Stimulation (DBS) in Dystonia.
Potential questions which the multidisciplinary board may address include (but are not limited to):
INDICATION DBS candidate yes/no?
TARGET Which Target; GPi, STN, VoA?
PROGRAMMING Treatment advices of implanted patients
To make use of this opportunity, relevant medical data must be provided via the telemedicine platform CPMS beforehand.
Advice will be provided by at minimum one dystonia expert specialized in DBS and a stereotactic surgeon specialized in DBS, plus further specialists invited case-by-case in a virtual meeting with the referring clinician.
Neuroradiology Expert Advice for Diagnostic and Management Decisions in RND
ERN-RND has established a standard pathway for providing expert neuroradiological advice across sites. Our ERN-RND member hospitals (and affiliated partners) are encouraged to contact us for any RND case for which they would like a second opinion as a basis for individual recommendations for diagnostic and management strategies to optimize patient care.
Possible scenarios for which clinicians might want to use this offer include (but are not limited to):
Child with mild developmental delay: benign / onset of disease? -> cMRI: delayed brain maturation vs. (subtle) structural abnormalities
Child with delay + subtle signs: acquired / genetic? -> cMRI: acquired disease, e.g. CMV infection / TORCH vs. likely genetic
Acutely ill patients with suspected encephalopathy -> cMRI: secondary, e.g. infectious / para-infectious vs. metabolic / genetic
Cerebellar syndrome with fast progression -> cMRI: secondary, e.g., cerebellitis vs. genetic
Patient after pharmacological treatment showing brain volume reduction -> cMRI: side effects vs. neurodegenerative / neurogenetic disease
To make use of this opportunity,imaging data must be provided via CPMS. Advice will be provided in a virtual meeting between the referring physician plus the initial neuroradiologist and a dedicated ERN-RND neuroradiological expert clinician (and further experts if necessary. Meetings are facilitated by the ERN-RND CPMS helpdesk.
You are affiliated to an ERN-RND expert center and would like to receive neuroradiology advice for one of your patients? Please contact us.
Learn more about the Neuroradiology Expert Advice Panel in this video interviewwith Eva Bültmann, who is an expert in neuroradiology and coordinates this panel.
ERDERA WEBINAR SERIES
ERDERA: Diagnostic Research Workstream Webinar Series
The series brings together ERN healthcare professionals, clinicians, geneticists, researchers, and other stakeholders to learn about the work, progress, and outcomes of the ERDERA Diagnostic Research Workstream (DRW).
Sessions will cover the full scope of the workstream — from governance and methodology to concrete analytical results — offering audiences a transparent and evolving view of how ERDERA is advancing diagnostics in rare diseases.
Delivered as online webinars, the series is accessible to both internal ERN audiences and external expert communities, reflecting ERDERA’s commitment to open knowledge-sharing and collaboration across borders.
EURORDIS Patient Partnership Webinar Series “Transition in Healthcare: Turning recommendations into practice”
This is a webinar series highlighting how ERN recommendations on transition from adult to paediatric care are being translated into wide practice, with a focus on patient partnership.
Webinar #1 Setting the scene: From evidence to implementation in transition in healthcare
12th Congress of the European Academy of Neurology
June 27-30, 2026, Geneva, Switzerland
EAN's overarching theme for 2026 is Brains, Bytes & Beyond: Tech in Neurology. The outsourcing of cognitive capacities from humans to artificial intelligence offers huge opportunities but also significant challenges and risks. In clinical neurology, the impact of computing will range from applications like restorative therapies to the very fundamentals of our profession such as clinical reasoning and decision making. Through this year’s theme, EAN will explore the extent to which computing is finding its way into neurological practice.
For 25 years, the European Federation of Neurological Associations (EFNA) has championed the rights and needs of people living with neurological disorders across Europe. As the burden of neurological conditions continues to rise, there is an urgent need for collaborative, inclusive, and forward-thinking approaches to policy, care, and research.
In response, EFNA is launching its inaugural EFNA Conference in September 2026, coinciding with Ireland’s Presidency of the Council of the European Union. This landmark event will serve as a platform to bring together neurology patients, patient organisations, policymakers, clinicians, researchers and industry representatives to co-create a more inclusive and impactful neurology landscape in Europe.
The EPNS Research Meeting 2026 unites paediatric neurologists and researchers at all career stages to share ideas, present work, and spark collaborations across Europe and beyond.
Please note that it is an EPNS member only event.
To registerclickhere.Find the preliminary programmehere.
EHDN CONGRESS 2026
EHDN Clinical Research Congress 2026
October 22–24, 2026, Krakow (Poland)
The congress will further strengthen the integration of the clinical development programme. As in previous years, the biennial meeting will feature the EHDN Business Meeting, a strong focus on ongoing and upcoming clinical trials, and presentations on cutting-edge scientific advances.
All sessions will be open to clinicians, scientists, advocates, and family members impacted by Huntington’s disease. The networking and social programme will offer further opportunities to connect, collaborate, and engage across the Huntington’s disease community.
Have a look at the preliminary programmehere. To register click here.
ICAR 2026 November 10-13, 2026, Atlanta, Georgia (USA)
Ataxia UK, National Ataxia Foundation (NAF), Friedreich’s Ataxia Research Alliance (FARA), and Ataxia Global Initiative (AGI) are pleased to announce the date for the nextInternational Congress for Ataxia Research (ICAR).
ICAR 2026 will take place at the Renaissance Atlanta Waverly Hotel & Convention Center in Atlanta, Georgia, U.S. Please save the date for November 10-13, 2026.
ICAR 2026 will be the place to share the latest ataxia research, including updates on Friedreich's ataxia and SCAs 1, 2, 3, 6, 7, and more. Attendees will hear developments in novel treatment approaches, clinical trial results, and scientific debates from leading ataxia researchers. There will also be the opportunity to network with academic and industry leaders. Special sessions and events are planned for junior researchers.
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