December 2021


Copy of ERN-RND Christmas card
Season's greetings!
We want to thank you for your interest in ERN-RND this year and hope you will have the opportunity to take a break during this holiday season.

Starting in 2022, we will focus on expanding ERN-RND, both in size and timeframe, and integrating ERN-RND in national healthcare systems. We look forward to keeping you informed about all our activities!

Best wishes,
the ERN-RND coordination office
Disease knowledge
On our website, you can find information on the six Disease Groups covered in ERN-RND. This month, we put some of our information on frontotemporal dementia in the spotlight. There's much more where this came from, so visit the Disease Knowledge page on our website!


Upcoming joint webinars by ERN-RND, EURO-NMD, EAN
  • ERN-RND webinar, 7 December 2021, Deep brain stimulation in children with acquired dystonia by Anne Koy, University Hospital Cologne, Germany. Sign up here.
  • ERN Euro-NMD webinar, 16 December 2021, Palliative Care in Neuromuscular Disorders by Tracey A Willis and Derek Willis, Robert Jones and Agnes Hunt Orthopaedic Hospital NHS FT, UK; Chester University and Palliative Care Centre, UK. Sign up here.
On our website, you can find the first webinars for 2022! The first one is:
  • ERN-RND webinar, 11 January 2022, Anti-spastic therapies in Hereditary Spastic Paraplegia by Marcondes C. França Jr., University Campinas (UNICAMP), Brasil. Sign up here.


Banner Winterschool Neurorehabilitation Online
3rd ERN-RND Winter School in collaboration with EPNS
We are happy to announce that the third ERN-RND Winter school jointly organized with EPNS will take place from 20.-22. January 2022. Due to the current COVID-19 situation in Europe, this event will take place online.

The focus will be on Neurorehabilitation and it will cover both adult and paediatric topics and approaches (see programme). It is open to Medical Doctors but also to Physiotherapists, Nurses and other medical personnel involved in neurorehabilitation activities.

In order to find more information and to register until 12 December 2021, please visit our website
_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.
More information about the programme can be found on our website.

Due to the current COVID-19 situation, secondments in the period of December to February 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 March to August 2022!

Apply now!


The European Joint Programme on Rare Diseases just pre-announced 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

The call will open on December 14th.
Timetable, contact, and more information here:


Eurordis photo award
EURORDIS Photo Award
The EURORDIS Photo Award is an opportunity to visually express what it means to live with a rare disease and to share your story with the rare disease community and beyond.
The contest is open to all nationalities, ages, and diseases. Every year, hundreds of people from all around the world submit their photos, each reflecting the drive of people living with a rare disease.
Submissions for the 2022 Photo Award will be open until 16 January 2022.


Save the date!
The Solve-RD Annual meeting 2022 will take place from Monday 25 to Wednesday 27 April in Prague, CZ.


    Frontiers E-Book on Research Topic Networks in Movement Disorders
    Edited by: Alberto Albanese, Holm Graessner and Ludger Schöls

    Albanese, A., Graessner, H., Schoels, L., eds. (2021). Networks in Movement Disorders. Lausanne: Frontiers Media SA. doi: 10.3389/978-2-88971-719-4

    Webinars from

    AGI webinar 8 December
    AGI YII webinar: Magnetic resonance imaging in clinical care and research of ataxias
    Date: 14 December 2021, 21.00 CET
    Venue: Online
    EJP RD Rare Disesase Training Webinar: Does Randomization matter in RD clinical trials?
    Date: 14 December, 16.00 CET
    Venue: Online

    Registration is open until 10 December.
    Sant Joan de Déu Hospital (Barcelona)- Pediatric movement disorders series: childhood-onset Parkinsonism
    Date: 18 January 2022, 15.00 CET
    Venue: Online

    IRDiRC Telehealth Task Force

    IRDiRC’s Therapies Scientific Committee (TSC) & Interdisciplinary Scientific Committee (ISC), alongside with the University of Twente are jointly establishing a Working Group to explore the role and value of medical devices in rare diseases. The Working Group aims to create a better understanding and enhanced awareness of device developer’s needs, the standardized outcomes to define user needs for devices, and to offer a groundwork for developing solutions to improve the (regulatory) landscape of MedTech use for rare disease patients.

    Interested candidates can submit their application (CV, biosketch and letter of motivation, one paragraph each) to the Scientific Secretariat before 14 December.


    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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