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There is an updated version of ‘Duchenne and you’ website available for you to visit at https://duchenneandyou.eu/ Welcome to visit the site and get useful information on DMD (articles & videos included).
We have established secretariat office to provide solution on expansion of our activities. In that way, we believe to make our organization more recognizable and accessible to the community. For secretariat office contacts please check the following link http://www.eamda.eu/secretariat/
European Reference Networks (ERNs) is formed by experts in rare diseases. All ERNs provided their opinion on the priorities and contraindications for patients with a rare disease within their network. The results are summarized in this document and were discussed during the internal ERN-Coordinator group meeting of January 27th, 2021. For more please read the […]
This guidance document is intended for clinicians caring for COVID-19 patients during all phases of their disease (i.e. screening to discharge). This update has been expanded to meet the needs of front-line clinicians and promotes a multi-disciplinary approach to care for patients with COVID-19, including those with mild, moderate, severe, and critical disease. The following […]
The European Patients’ Forum, an umbrella organisation representing 72 member organisations across the European Union, calls on policymakers and other stakeholders to take into account the importance of vaccination for patients with chronic conditions. See the link: Manifesto on the importance of vaccination for patients with chronic conditions
Vaccine hesitancy, misinformation and distrust are among the top threats to global health. On 14 January 2021, we launched our Guide “Let’s Talk about Vaccination” in a virtual event to fill in the information and awareness in patient communities and civil society. Developed in collaboration with patient advocates, the guide complements and expands on our […]
The COVID-19 pandemic has led to the development and approval of new vaccines in a much shorter time-frame than usual. As a result, there are still several questions that patients and civil society need to be answered. This virtual event gathered credible experts in the field of therapeutics and vaccines to shed light on all […]
The World Muscle Society has published recent updates on COVID-19 and people with NMD, answering general but very important information related to the vaccines. We encourage you to get familiar with the document titled: “COVID-19 and people with neuromuscular disorders: World Muscle Society advice – Vaccines”.
We are announcing International conference on NMD to be organized online between 9th and 10th December 2020. Please follow this link for details and save the date: http://www.eamda.eu/international-conference-on-nmd-2020/
Summer is a great time to travel and explore new places. Unfortunately, traveling is not always possible for people with neuromuscular disorders in Bulgaria. The reason for this is because of the inaccessible environment and difficult access to many touristic places. In the last few years thanks to different voluntary organizations like the association “Ela […]
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