ERN-RND Annual Meeting 2026 – Registration open

on 08-10 October 2026 in Rome, Italy.

We are happy to announce that the ERN-RND annual meeting Care-RND26 will take place from Thursday 8th to Saturday 10th October 2026 in Rome, Italy, and online via Zoom.

The participation to the annual meeting is open to ERN-RND members only:

  • Full members and affiliated members are invited: ERN-RND will cover the travel and accommodation costs for 1 attendee per HCP but it is of course possible for more than one representatives per HCP to register and attend the meeting at their own expenses.
  • Supporting partners are welcome to attend in person but will have to cover their travel and accommodation themselves.

The deadline for on-site registration is Sunday 6th September 2026.

Event at a glance

Who? ERN-RND members (at least one representative per HCP)
When?
 8-10 October 2026
Where? Ospedale Pediatrico Bambino Gesu, San Paolo site, Rome, Italy
V.le di San Paolo, 15, 00146 Roma RM, Italy

Registration and Programme

To register to the annual meeting please click here – open for onsite participation until 6th September 2026:

Registration to Annual Meeting

Find the programme here:

Programme



Please note that you are responsible for organizing your own travel and accommodation. The reimbursement follows the unit costs policy irrespective of the actual costs. For accommodation you will be reimbursed 114€ per hotel night. Travel reimbursement can be calculated here.

Hotel suggestions:

  • Hotel Pulitzer

Viale Guglielmo Marconi 905, 00146 Roma
www.hotelpulitzer.it
18 min walk to the venue, 15 min by public transport
175 € per night for a single room
10% discount with the code “10% OFF Planetaria” when booking via their website

  • BV Oly Hotel

Via Santuario Regina degli Apostoli 36, 00145 Roma
https://www.bvolyhotel.com/en/
19 min walk to the venue, 15 min by public transport
159 € per night for a single room

Looking forward to seeing you in Rome!

For further information please contact Sophie Ripp () or Lena Urbanczyk ()

Scientific Symposium “Registries for RND”

Interested in Registries for Rare Neurological Diseases? Then join our Scientific Symposium on October 10 – online and free of charge! To register click here.

PROGRAMME

Session 1: Framework for RND Registries

TIME (CET)TOPICSPEAKER
08:00Welcome and overview of
ERN-RND activities
Holm Graessner / Ludger Schöls / symposium chairs
08:05—– KEYNOTE —-
Why Registries Matter for Rare Neurological Diseases: from Natural History to Trial Readiness
Thomas Klockgether, German Centre for Neurodegenerative Diseases (DZNE), University Bonn, Germany
08:35Framework for Multistakeholder Patient Registries in the Field of Rare Neurological DiseasesNicole Wolf,
Amsterdam UMC – Amsterdam University Medical Center, Netherlands
08:55Patient Perspective: What should registries deliver for patients and families?Mary Kearney,
FARA Ireland
09:05Flash talks (5 min max): ERN-RND local registry initiatives 
09:20Coffee Break 

Session 2: Registry Examples in ERN-RND

TIME (CET)TOPICSPEAKER
09:50ERN-RND Use CaseChristina Vossler-Wolf, University Hospital Tübingen, Germany
10:05TreatHSP Natural History and
Outcome Validation Platform
Rebecca Schüle,
University Hospital Heidelberg, Germany
10:25The French MSA registryDavid Bendetowicz,
CHU – Reference Center for Rare Multiple System Atrophy, University Hospital Bordeaux, France
10:45NKX2-1 registry: Building an International Disease Registry in a Very Rare DisorderDario Ortigoza,
Sant Joan de Déu Hospital, Barcelona, Spain
11:05Panel Discussion 
11:30Coffee Break

Session 3: Regulatory and Methodological Perspectives

TIME (CET)TOPICSPEAKER
12:00Registry Qualification and Regulatory Expectations for Rare Disease Evidence GenerationKelly Plueschke,
European Medicines Agency
12:25Natural History Studies as
Historical Control Data in Trials
Ralf Reilmann,
George-Huntington-Institute, Technology-Park Münster, Germany
13:50Q&A and Closing Remarks
End of Event

For further information please contact Sophie Ripp ()

Download the programme here.