September 2021
Dear all,

We hope that you had a pleasant summer!

Here is the latest information as part of the ERN-RND Bulletin for September.


DG meetings:
  • Monday 13 September, 16h00 - 17h00 CET, 'Dystonia, Paroxysmal Disorders and NBIA’
  • Tuesday 14 September, 17h00 - 18h00 CET, 'Frontotemporal dementia (FTD)'
  • Thursday 16 September, 17h00 - 18h00 CET, 'Ataxia & Hereditary Spastic Paraplegias (HSPs)'
  • Thursday 23 September, 16h00 - 17h00 CET, 'Atypical Parkinsonism'
  • Monday 27 September, 17h00 - 18h00 CET, 'Chorea & Huntington's Disease (HD)'
  • Tuesday 28 September, 17h00 - 18h00 CET, 'Leukodystrophies'
Other meetings:
  • Tuesday 14 September, 17h00 - 18h00 CET, 'ERN-RND validation of HSP scales - older children'
  • Thursday 30 September, 15h00 - 16h30 CET, ERN-RND ePAG representatives


The following new documents have been uploaded to the Collaborative Platform (CP):
  • Minutes DG meetings (Annual Meeting): 'Ataxia & HSPs‘ (30 June), 'Dystonia, Paroxysmal Disorders and NBIA’ (30 June), 'Atypical Parkinsonism' (30 June), 'Choreas & Huntington's Disease' (1 July),
  • Minutes WG meetings (Annual Meeting): 'Neurorehabilitation' (1 July), 'Education & Training' (1 July)
  • Minutes 'Resources and good practices for guideline development' (Annual meeting, 1 July)
  • Minutes ERN-RND Board meeting (2 July)
  • Minutes onboarding meetings: DG 'Atypical Parkinsonism' (23 April and 19 May)
All other minutes and slides from the Annual Meeting will also be uploaded to the CP when finalised.
ERN-RND Annual Meeting introduction presentation
The introduction presented by our coordinator Holm Graessner at the ERN-RND Annual Meeting on Wednesday 30 June is now available on the homepage of the ERN-RND website (click the blue button 'ERN-RND information presentation 2021' on the homepage or just click the button below).


Upcoming ERN-RND, ERN EURO-NMD and EAN joint webinars:


Final Banner ERN-RND Exchange Programme_082021_updated
ERN-RND Short Exchange Programme: call for applications!
Until August 2022, healthcare professionals (clinicians, nurses, physiotherapists etc.) affiliated to ERN institutions (Full Members or Affiliated Partners) can receive organizational and financial support for secondments in ERN expert centres other than their home institution, supporting the sharing of knowledge and stimulating collaboration.

You already made plans to visit another ERN centre? Apply any time (but at least eight weeks prior to your trip) via our online portal.
You want to explore ERN-RND but do not know where to go? Check the ERN-RND host offers on neurorehabilitation and on DBS for Dystonia on our website or contact us.

As increasing vaccination rates and the EU Digital COVID Certificate finally allow safe travelling within the EU again, we are looking forward to your application!
ERN-RD-Training-and-Support-Program- (002)
EJP RD ERN Research Training Workshop Call
The European Joint Programme on Rare Diseases (EJP RD) has launched the ERN Research Training Workshops funding opportunity. The goal of the workshops is to train researchers and clinicians affiliated to an ERN - Full  Members or Affiliated Partners - in relevant topics on research in rare diseases. Training themes may include innovative research methodologies, diagnostic research methodologies, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Moreover, the workshops will be aiming to provide a cross-ERN added value. 

Application deadline: 4 October


CPMS Case discussions jour fix
Recently, regular Online Case Discussions were added to the ERN-RND activities. Anyone from the ERN-RND network is welcome to join, contribute to the discussion and learn from the approaches of their colleagues.
These meetings are organized every two months for every disease group, with alternating discussions of either unsolved and complex cases for advice on diagnosis and treatment or presenting the general disease management of ERN-RND centres based on single patient examples.

In our second round of discussions in September (and beginning of October) we are looking forward to interesting disease management discussions, starting with a special focus on DBS for dystonia – a highly specialized service within ERN-RND.

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

Upcoming meetings:
Save the dates:
  • Dystonia, NBIA, Paroxysmal Disorders (unsolved & complex cases):
    21.10.2021, 16:00 – 18:00 CET
  • Ataxia and HSP (unsolved & complex cases):
    18.11.2021, 16:00 – 18:00 CET
  • Leukodystrophies (unsolved & complex cases):
    25.11.2021, 16:00 – 18:00 CET


Pluripotent stem cells for rare disease research banking, data, application
Pluripotent stem cells for rare disease research: banking, data, application
Date: 25-27 October
Location: Online
This training is organised by Fraunhofer Institute for Biomedical Engineering and Fondazione Telethon and aims at providing an overview on how human pluripotent stem cells can be used as research tools.
Register before 27 September!


Italian mitochondrial conference 2021
Italian Mitochondrial Disease Conference 2021
Date: 15-16 October 2021
Venue: Online
The meeting will bring together physicians, researchers, stakeholders, and patients and it will be a unique opportunity to discuss and update on current understandings of mitochondrial diseases and pathways towards diagnosis and treatment.
This conference will be held in English.


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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