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Newsletter - January 2020 ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏ ͏
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Translational Summer School 2020
We are delighted to announce that planning for our third Translational Research Summer School which will be held in July 2020 in Leiden, Netherlands is well underway. Building on the past two summer schools, both of which received excellent feedback, our residential course will furnish attendees such as researchers and clinicians with a well-rounded knowledge of the translational pathway.
Attendees will also benefit from the very latest knowledge available in the neuromuscular community as this course is delivered by notable key stakeholders in the field. Our summer school is targeted at MDs, PhD/Postdoc researchers and others working in translational research in the NMD or RD field.
- To ensure a high-quality interactive learning experience class sizes are kept deliberately small -
We have been successful of securing funding to assist with this year's and as such we are able to offer reduced fees and pay accommodation costs for most attendees. We really hope that this encourages those of you who have not applied previously due to budget constraints to consider applying to attend.
With these things in mind, we recommend applying promptly to ensure the maximum chance of successfully securing a place at our next Summer School. We look forward seeing some of you in Leiden! |
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Next round of travel bursaries announced!
This second round of travel bursary applications is now open!
We are delighted to announce that our second round of travel bursaries have now opened.
The bursary scheme is open to young researchers/doctors under the age of 40 years old that belong to one of the EURO-NMD healthcare providers. For 2020 we have put in place two grants of 500 € each to attend a scientific meeting in the neuromuscular field.
The two successful applicants from the previous bursary call were:-
- Guido Primiano from Fondazione Policlinico Universitario A Gemelli IRCCS in Rome who wants to attend the EUROMIT conference in Newcastle in June 2020.
- Daniel Natera de Benito from Hospital Sant Joan de Déu in Barcelona who wants to attend ICNMD in Valencia in July 2020.
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Rare Disease Day is fast approaching
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Rare Disease Day takes place on the last day of February each year.
2020 is a leap year meaning Rare Disease Day is 29th February!
The main objective of the day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
You still have time to organise something to raise awareness throughout your community. Visit the Rare Disease Day website to find out what is happening in your area and how you can get involved.
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International course: Training on strategies to foster solutions of undiagnosed rare disease cases
The Course is made up of 3 days of residential training organized by ISS, Istituto Superiore di Sanità, in close collaboration with EJP RD task partners: EKUT, LBG (LBI-RUD) –Ludwig Boltzmann Gesellschaft GMBH, Vienna, Austria; ACU/ACURARE – Acibadem Universitesi, Istanbul, Turkey; ISCIII – Instituto de Salud Carlos III, Madrid, Spain; INSERM (AMU) Institut National de la Santé et de la Recherche Medicale, Marseilles, France; FTELE Fondazione Telethon, Milan, Italy; UMCG Academisch Ziekenhuis Groningen, Netherlands; IMAGINE Imagine Institut des Maladies Genetiques Necker Enfants Malades, Fondation, Paris, France; CNAG-CRG Fundacio Centre de Regulacio Genomica, Barcelona, Spain; IPCZD (CMHI) – Instytut Pomnik Centrum Zdrowia Dziecka, Warsaw, Poland, and with the endorsement of ICORD International Conference On Rare Diseases and Orphan Drugs. Several initiatives have been undertaken at national and international level for undiagnosed rare diseases aimed at identifying clinical pathways and innovative methods to reach diagnosis. This course will illustrate methodologies and tools already used internationally and will provide participants with useful examples for the resolution of undiagnosed cases. The course will provide participants, through the presentation of sample use cases that have long eluded diagnosis, with useful tools, instruments and knowledge on novel strategies to foster solutions of undiagnosed RD cases. Moreover, the course will facilitate networking among professionals involved in undiagnosed rare conditions.
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New Publication: European Reference Network for Rare Neuromuscular Diseases (EURO-NMD). The history behind its constitution and the first steps
Network Coordinator Teresinha Evangelista has published an article in Médicine Sciences. Written in French, this article looks back over the last three years from the beginning of the network and why ERNs we created.
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6th Congress of the European Academy of Neurology
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Early bird registration is now open!
The overarching theme of the congress is “Time for Action: Predict, Prevent, Repair”. The ‘red thread’ of the congress will show and demonstrate in many sessions with a rich spectrum of high-quality information the novel therapeutic interventions, designed to predict, protect and repair neurodegenerative diseases. Congress dates - 23-26 May 2020
The congress will take place in a newly renovated congress venue, Paris Expo Porte de Versailles, a model of sustainable development, a place to live, as well as the largest French exhibition centre, which is in the heart of Paris and easily accessible by public transportation, scooters or Velib’ bikes.
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eNMD 2020
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eNMD 2020 is an International Congress that will bring together physicians and other professionals in the field of health, clinical and basic science researchers, biomedical and bioinformatics engineers, patient associations, public and private partners in order to share the most recent discoveries to improve diagnosis and treatment and to offer the most modern and functional technological assistive solutions in neuromuscular diseases. Topics covered at this meeting - E-Health & Innovation to overcome barriers in Neuromuscular Diseases
- Digital Outcome Measures
- Biosensors and Connecting Devices
- Robotics
- Digital Neuromuscle Imaging
- Telemedicine and mobile-HEALTH
- Molecular Biotechnology and Drug Development
Early registration fee is available until 31st January
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Register now for the 8th Paediatric Neurology Face-to-Face course
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Registration is now open for the 8th Paediatric Neurology Face-to Face course (in Spanish) - 8th Avances en patología neuromuscular en la infancia. This course will be taught in Spanish and will be held in Hospital Universitari Sant Joan de Déu, Barcelona. We are delighted to announce that this course has been endorsed by our Education Board. Early bird registration is available until 29th February 2020.
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New Share4Rare Chapter for Congenital Muscular Dystrophies and Information about NMD Pilot
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Share4Rare is working with clinicians, patients and families to create a library of medical content for rare neuromuscular diseases. The Congenital Muscular Dystrophies chapter is now available on the Share4Rare website.
Quality of life questionnaires for the Share4Rare neuromuscular disease pilot will be available to registered users of the platform soon. If you are an adult with a neuromuscular disease, or a carer for a family member with a neuromuscular disease, register now at https://www.share4rare.org/registration/s4r to participate. More information about the survey will be available in February.
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