ERN-RND Newsletter header_RDD
February 2021


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Upcoming joint webinars by ERN-RND, EURO-NMD, EAN
ERN-RND_Rare Disease Day webinar_2021_220120201
ERN-RND webinar for Rare Disease Day 2021
Date: 23 February 2021, 3-4pm CET
Webinar: "Improving care for rare disease patients in Europe – Rare Disease Day"
We will be discussing the care of rare disease patients in Europe, focusing on rare neurological diseases, and providing different perspectives: from the clinician to the patient’s perspective and from a European level to a more local one with examples from France, Germany and Hungary.


21-32. RDD Case Study FB_TW Tristan
Rare Disease Day
Rare Disease Day takes place every year on the last day of February, a rare date, and across the world. Its objective is to raise awareness of rare diseases amongst the general public, policy makers and public authorities, for example, throughout the whole month of February. This is done by organising events, sharing stories, facts and pictures on social media … the only limitation is your imagination!
Rare Disease Day is a very important campaign and date for the rare disease community because there is no cure for the majority of rare diseases and many go undiagnosed. Sharing knowledge of rare diseases amongst the general public as well as encouraging researchers and decision makers to address the needs of those living with rare diseases is key to address this.
This year, Rare Disease Day will take place on 28 February.


Training workshop topics on research in RD within the EJ-RD - open call
The European Joint Programme on Rare Diseases (EJP RD) has opened the call for selection of topics for research training workshops.
Applicants from ERN Full Members or Affiliated Partners can submit WORKSHOP TOPICS on rare diseases research to obtain funds (25.000€) in order to conduct a 2-day workshop.
The call is open until 7 March 2021.
Please note that due to the Covid-19 pandemic, selected proposals will have up to 18 months to conduct the research workshops.


EURORDIS leadership school
Applications for the EURORDIS Leadership School are open!
The EURORDIS Leadership School is a series of webinars, from June to November, and an intensive online training from 5-7 October 2021. Its aim is to empower European Patient Advocacy Groups (ePAGs) advocates and other rare disease patient advocates to be valued partners in European Reference Networks (ERNs) and when engaging with healthcare providers and other rare disease stakeholders.
The deadline for applications is 21 February.


Event: Rare 2030 Final Policy Conference
Date: 23 February 2021, 13.30-­18.30 CET
Venue: Online
This event marks the end of the Rare 2030 foresight project with the presentation of the final recommendations that will lead to improved policy and a better future for people living with a rare disease in Europe.
ERN-RND coordinator Holm Graessner will participate to the “diagnostics” breakout session at 16.00 CET.
Event: EURORDIS Black Pearl Awards
Date: 24 February 2021
Location: Online
The Black Pearl Awards takes place every year in February to mark Rare Disease Day and to celebrate the outstanding commitment of those who strive to make a difference for the rare disease community.
EAN-EC21-Congress-Banner-1025x275 (002)
Event: 7th Congress of the European Academy of Neurology - Virtual 2021
Date: 19-22 June 2021
Location: Online
The EAN Congress which was scheduled to take place in Vienna, Austria has been moved to an entirely online event (due to the COVID-19 pandemic). Last year’s online event was a great success so don’t miss this unique opportunity to learn and network with the neurological community from all around the world!
Event: ERN-RND Annual Meeting 2021
Date: 30 June - 1 July 2021
Location: Online
The ERN-RND Annual Meeting gathering full members and affiliated partners was scheduled to take place in Leuven, Belgium. However, due to the COVID-19 pandemic, it has been moved to an online event to ensure the safety of all participants.


A green key with Research text on white laptop keyboard
  • Joana Afonso Ribeiro, Sara Simeoni, Lorenzo De Min, Tomoyuki Uchiyama, Yu Tung Lo, Nita Solanky, Hector Garcia‐Moreno, Paola Giunti, Jalesh N. Panicker , "Lower urinary tract and bowel dysfunction in spinocerebellar ataxias", Annals of Clinical and Translational Neurology (December 2020)
  • Carola Reinhard, Anne-Catherine Bachoud-Lévi, Tobias Bäumer, Enrico Bertini, Alicia Brunelle, Annemieke I. Buizer, Antonio Federico, Thomas Gasser, Samuel Groeschel, Sanja Hermanns, Thomas Klockgether, Ingeborg Krägeloh-Mann, G. Bernhard Landwehrmeyer, Isabelle Leber, Alfons Macaya, Caterina Mariotti, Wassilios G. Meissner, Maria Judit Molnar, Jorik Nonnekes, Juan Dario Ortigoza Escobar, Belen Pérez Dueñas, Lori Renna Linton, Ludger Schöls, Rebecca Schuele, Marina A. J. Tijssen, Rik Vandenberghe, Anna Volkmer, Nicole I. Wolf and Holm Graessner, The European Reference Network for Rare Neurological Diseases, Frontier in Neurology (January 2021)

These publications include one or more ERN-RND member. Please note that 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 at to let us know that you have recently published a research article.


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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