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ACT-EU
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The European Commission (EC), the Heads of Medicines Agencies (HMA) and the European Medicines Agency (EMA) have launched an initiative to transform how clinical trials are initiated, designed and run, referred to as Accelerating Clinical Trials in the EU (ACT EU). The aim is to further develop the EU as a focal point for clinical research, further promote the development of high quality, safe and effective medicines, and to better integrate clinical research in the European health system.
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COLLABORATION EJP RD & C-PATH
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Critical Path Institute (C-Path), an independent global nonprofit organization, and the European Joint Programme on Rare Diseases (EJP RD), an initiative that has received funding from the European Union’s Horizon 2020 research and innovation programme, have announced a collaboration to advance technologies and methodologies that are fit for regulatory purposes to further global rare disease research and drug development.
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ERN-RND
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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 dystonia and paroxysmal disorders in the spotlight. There's much more where this came from, so visit the Disease Knowledge page on our website!
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We are looking for a project manager and a communication manager to join the ERN coordination office in Tübingen, Germany. Applications until 28 February.
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Additionally, the Ataxia Global Initiative is looking for a project manager, based in the same team as the ERN-RND coordingation office. Apply until 28 February:
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Finally, the German Human Genome-Phenome Archive is looking for an officer for scientific communications and public relations. Apply until 6 March:
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WEBINARS
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Upcoming joint webinars by ERN-RND, EURO-NMD, EAN
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- ERN-RND webinar, 15 February 2022, New MDS criteria for clinical diagnosis of MSA by Gregor Wenning and Iva Stankovic, Medical University Innsbruck, Austria and University of Belgrade, Serbia. Sign up here.
This webinar is scheduled for 4 pm CET!
- EURO-NMD webinar, 24 February 2022, Targeted therapies for Leigh syndrome: systematic review and steps towards a "treatabolome" by Rita Horvath, Cambridge Rare Diseases Centre, UK. Sign up here.
- ERN-RND webinar, 8 March 2022, Brain Development in Huntington’s Disease by Peggy Nopoulos, Carver College of Medicine, University of Iowa, USA. Sign up here.
- EURO-NMD webinar, 10 March 2022, Muscle ultrasound, a biomarker tool for muscular dystrophies by Nens van Alfen, Radboudumc, Nijmegen, the Netherlands. Sign up here.
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TRAINING
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ERN-RND Short Exchange Programme: call for applications!
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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.
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More information about the programme can be found on our website.
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Due to the current COVID-19 situation, secondments in the period of December 2021 to May 2022 will not be supported by the ERN Exchange Programme.
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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!
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Share4Rare study on health-related quality of life in people living with rare diseases
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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?
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Reaching all the community is precisely the aim of our new cross-sectional study, focused in collecting specific information about the impact of the rare disease on the quality of life of patients and caregivers. We will subsequently correlate these data with factors like demography, time of diagnosis and disease-specific symptoms, and use this information to help key stakeholders design suitable and effective recommendations and guidelines. In order to understand the real impact of different diseases we need health information provided by a highly diverse group of people, so we would like to encourage all the rare disease community to participate. Are you in?
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If you are a patient or a caregiver and you would like to participate in this challenging project, you can register here.
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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.
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SOLVE-RD
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Registration and abstract submission open.
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The Solve-RD Annual meeting 2022 will take place from Monday 25 to Wednesday 27 April. The meeting will be fully virtual.
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Abstract submission is now open for SOLVE-RD partners until 14 March.
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Solve-RD beneficiaries, associated partners and collaborators can register for this meeting until 18 April.
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Events
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AGI Webinar: "Standard clinical assessment in ataxia"
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Date: 22 February
Venue: Online
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ERN eUROGEN Webinar: "Participate in patient-centered rare disease research with Share4Rare
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Date: 23 February
Venue: Online
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EPNS Case Discussion: Neuromodulation in Dystonia
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Date: 22 February
Venue: Online
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EPNS VIRTUAL Training Course: Acute Paediatric Neurological Diseases
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Date: 24 & 25 March
Venue: Online
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European Paediatric Neurology Society Congress
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Date: 28 April - 2 May 2022
Venue: Glasgow, UK & online
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Registration is now open!
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8th Congress of the European Academy of Neurology - Europe 2022
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Date: 25 - 28 June 2022
Venue: Vienna, Austria
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NEWSLETTER
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Thank you for your support and take care.
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ERN-RND Coordination team
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