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 document.
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 sections are entirely new: COVID-19 care pathway, treatment of acute and chronic infections, management of neurological and mental manifestations, noncommunicable diseases, rehabilitation, palliative care, ethical principles, and reporting of death; while previous chapters have also been significantly expanded.
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 other available information materials and gives guidance on having better conversations around vaccination.
Special thanks to Noël Wathion, Deputy Executive Director of the European Medicines Agency (EMA) and Isabel de la Mata, Principal Advisor for Health and Crisis management in DG SANTE for participating.
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 things related to the COVID-19 vaccines.
EPF Special Advisor Nicola Bedlington moderated a lively and informative discussion with:
• Prof. Jean-Michel Dogne, Member of WHO Global Advisory Committee on Vaccine Safety,
• Prof. Guido Rasi, former Executive Director of European Medicines Agency (EMA) and;
• Marco Greco, President of European Patients’ Forum.
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