January 2022
  • ERN-RND Annual Meeting
  • Documents
  • The CPMS in numbers
  • Upcoming webinars
  • CPMS case discussions
  • Funding
  • Events
  • Ongoing surveys
  • Job opening: project manager and communication manager ERN-RND
  • Research articles
  • Acknowledgement

ERN-RND Annual Meeting

ERN-RND Annual Meeting 2022
The ERN-RND Annual Meeting is scheduled for 29 September – 01 October 2022 in Tübingen, Germany. To enable participation of as many members as possible, we plan a hybrid event with one representative per HCP on-site.

Please mark your calendars – more information will follow.


The following new documents have been uploaded to the Collaborative Platform:
  • Minutes brainstorming meeting EURO-NMD, EpiCARE & ERN-RND - May & June 2021
  • Minutes call Dystonia, Paroxysmal Disorders & NBIA - 6 December 2021
  • Minutes call Leukodystrophies - 8 December 2021
  • Minutes call FTD - 16 December 2021
  • Minutes call Neurophysiology/myoclonus - 7 December 2021 & 17 January 2022
  • Minutes meeting 1 & 2 Postgraduate Curriculum


The Clinical Patient Management System (CPMS) is the secure IT platform of the ERNs for exchanging clinical data, allowing ERN clinicians to view and discuss unsolved and complex cases online – and thus the heart of cross-border healthcare in ERN-RND.
With a fresh start in the new year and many exciting advances in ERN-RND and CPMS, it is time to look back on CPMS usage in ERN-RND since its introduction in 2017.
CPMS in numbers_24.01
You can find the complete overview of CPMS panels per HCP here.

We invite especially those centres that have not yet used CPMS to enroll patients and benefit from cross-border healthcare.
This concerns our members in Aarhus, Bonn, Bordeaux, Bruxelles, Copenhagen, Groningen, Ljubljana, Luxembourg, Prague (Motol), München, Oulu, Paris, Rome, Rotterdam, Rozzano, Siena, Sofia and Toulouse as well as our warmly welcomed new members.

The CPMS helpdesks Alisa, Sanja and Tamara are always happy to help you to get familiar with the system!


Upcoming ERN-RND, ERN EURO-NMD and EAN joint webinars:
  • ERN-RND webinar, 25 January 2022, ASO RNA splice modulating therapies for genetic brain disorders by Willeke van Roon-Mom, University of Leiden, the Netherlands. Sign up here.
  • EURO-NMD webinar, 27 January 2022, Childhood onset Charcot-Marie-Tooth disease by Isabella Moroni, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy. Sign up here.
  • ERN-RND webinar, 1 February 2022, Learning by example: HD-JUNIOR a national registry for patients with juvenile onset Huntington's Disease by Hannah Bakels, Leiden University Medical Center, the Netherlands. Sign up here.
  • ERN-RND webinar, 8 February 2022, The overlap between the spectrum of frontotemporal dementias and atypical Parkinsonism by Vasilios Constantinides, National and Kapodistrian University of Athens, Greece. Sign up here.


„In CPMS, I have contributed on both sides, first as an expert and also by presenting a clinical case. I have already used the previous CPMS, and the new one is more user-friendly. Preparing a clinical case for the current CPMS takes about the same amount of time as for other types of meetings.” – Juan Dario Ortigoza Escobar, Barcelona

Online case discussions jour fix
Recently, regular Online Case Discussions were added to the ERN-RND activities. Any clinician from the ERN-RND network is welcome to join, contribute to the discussion and learn from the approaches of their colleagues.

You would like to contribute with a case to the discussions?
Please contact us ASAP!

Upcoming meetings:
Dystonia, NBIA & Paroxysmal Disorders (disease management):
03.02.2022, 16:00 – 17:30 CET

Ataxia & HSP (unsolved/complex case):
10.02.2022, 16:00 – 17:30 CET

Leukodystrophies (disease management):
17.02.2022, 16:00 – 17:30 CET

Atypical Parkinsonism (disease management):
03.03.2022, 16:00 – 17:30 CET

Choreas and Huntington’s disease (disease management):
11.03.2022, 10:00 – 11:30 CET

More information and registration via this link.


_Final Banner ERN-RND Exchange Programme_2021
ERN-RND Short Exchange Programme: call for applications!

Healthcare professionals (clinicians, nurses, physiotherapists, etc.) affiliated to ERN institutions (Full Members or Affiliated Partners) can receive organizational and financial support for secondments with clinical focus lasting up to four weeks in ERN expert centres other than their home institution, supporting the sharing of knowledge and stimulating collaboration.

Belén Perez Dueñas from Barcelona visited the University Medical Centre in Groningen within the programme – here is what she has to say about her 13-days stay focusing on DBS in children and young adults with dystonia:
“The days I spent at the department with Marina, Martje and the rest of the group have inspired me a lot; I have learnt from them how to improve our clinical and research work at Vall d'Hebrón. They are a highly qualified team that takes care of people to make them feel comfortable and motivated. The ability they have to guide and supervise the research and clinical studies of so many doctors and students, and to strengthen their focus of interest in the field of movement disorders was amazing. Also remarkable were the educational and multidisciplinary sessions they organized for the best care of patients. And last for not least, I will always be grateful for the breaks they organized for having lunch and fun together.”

Are you inspired to go on a trip yourself? Please find more information about the programme on our website!

Please note: due to the current COVID-19 situation, secondments in the period of December to April will not be supported by the ERN Exchange Programme.
However, the online application portal remains open during the winter months and we highly encourage applications for secondment in the period from May to August 2022!

Apply now!
The European Joint Programme on Rare Diseases announced the official launch of the Joint Transnational Call 2022, a funding opportunity for research projects on the development of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases.
The aim of the funding opportunity is to enable scientists in different countries to build an effective collaboration on a common interdisciplinary research project based on complementarities and sharing of expertise, with expected impact to use the results in the future for benefit of patients

Topic: Development of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases

JTC2022 timetable, contact, and more information here.


EUROGEN webinar
eUROGEN webinar
Date: 2 February 2022
Venue: online

Despite the inherent rarity of a rare disease, it is not rare to have a rare disease. The same is true for its impact on daily life and psychosocial burden. Research shows remarkable similarities in the need for care across different rare diseases (e.g., coping with uncertainty, quality of life, holistic care, and social support). In this webinar, we will address these needs for rare diseases, and shed light on how to reach and support as many patients as possible
Ceremony banner (2)
EURORDIS Black Pearl Awards Ceremony
Date: 8 February 2022
Venue: online

Registration is now open for the next EURORDIS Black Pearl Awards ceremony. You can register for free by clicking on the button below.
EJPRD- ERICA Joint Workshop “Finding RD registry data in the Virtual Platform”
Date: 9 February 2022
Venue: online

A hands-on session will be held for you (as Virtual Platform (VP) end-users) to test the first version of the VP, provide feedback and address any further open questions.
AGI webinar series - WG1
AGI webinar
Date: 22 February 2022
Venue: online

Scope of the seminar is to introduce and present a standard clinical assessment program for ataxia studies. Focus will be on the discussion of the strengths and weaknesses of available clinical scales. The seminar will provide an outlook of further development of scales and their use in upcoming clinical trials.
Date: 28 April - 2 May 2022
Venue: Glasgow, UK & online

Registration for the 14th Congress of the European Paediatric Neurology Society (EPNS) is now open for onsite and virtual participation.
Date: 25 - 28 June 2022
Venue: Vienna, Austria

Abstract submission has been extended until 2 February 2022.
Date: 27 June - 1 July 2022
Venue: online

Poster abstracts submissions for the ECRD 2022 are now open until 31st March 2022.
Date: 3 - 7 July 2022
Venue: Lisbon, Portugal

Register via the button below.
Date: 9 - 13 July 2022
Venue: Paris, France

Abstract submission is open until 22 February 2022.


For members of the Ataxia/HSP and paediatric issues group:
The ERN-RND Disease Group Ataxia and HSP has started a Guideline Development about the Management of Transition from Pediatric to Adult Care in Ataxia and HSP and in other rare neurological disorders. To get an overview about the current management of transition in the HCPs of ERN-RND, a questionnaire is collecting answers from pediatric and adult neurologists.

Deadline for responding: 1 February 2022.
For members of the FTD group:
The ERN-RND Disease Group FTD is planning an expert opinion paper on the management of behavioral disturbance in FTD. A survey has been designed to collect the state-of-the-art drug and non-drug management for the respective behavioral disturbances in the different centers.

Deadline for responding: 1 February 2022.
Share4Rare study on health-related quality of life in people living with rare diseases
This new Share4Rare study will gather specific information on the effects of the disease on people’s quality of life, which will help professionals and policymakers to make more accurate decisions and design suitable recommendations. Will you join us to do some research?

If you are a patient or a caregiver and you would like to participate in this challenging project, you can register here.
The study is available in Spanish and English and will close on 14th February, as the results will be disseminated on Rare Disease Day 2022.


We are looking for a project manager and a communication manager based in Tübingen, Germany.

Applications are open until 1 February. More information via the buttons below.


Once we are made aware of a new publication to which an ERN-RND member has contributed, we post the link to it in the news section of the ERN-RND website here.
You can also email us directly to let us know that you have recently published a research article.


Please use one of the sentences below to acknowledge ERN-RND in all publications/presentations/clinical trials etc. (this document can also be found on the Collaborative Platform).
If possible, the logo should also be displayed.
Kind regards,
ERN-RND Coordination team
This is an internal email which was sent to ERN-RND full members, affiliated partners and ePAG patient representatives.
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