SMA NBS Alliance published a whitepaper and call of action on the need for newborn screening for Spinal Muscular Atrophy (SMA). More information you can find on https://www.sma-screening-alliance.org/
EAMDA has 2 new advocacy experts in medicines research, development and therapeutic innovation!
Jana Popova, EC Member of EAMDA and member of the Bulgarian Association for Neuromuscular Diseases and Arabela Acalinei, secretary of EAMDA and President of Neuro Move CMT Association in Romania are both graduates of the European Patients’ Academy on Therapeutic Innovation (EUPATI).
EUPATI is a 15 months intensive training course that has been specifically designed to meet the needs of patients and patient advocates who have the motivation and skill set to acquire and apply expert-level knowledge across the whole spectrum of the medicine research and development process. It coveres topics like medicine research and development, clinical trials, regulatory affairs, pharmacovigilance, HTA and therapeutic innovation.
As an organization that strongly believes in a good representation of our members, we are glad that EAMDA’s team members are capable of engaging European stakeholders, aligned to EU policies, good practices and inovations.
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 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 document can be reached here: WHO-2019-nCoV-clinical-2020.5-eng
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.
Visit www.eu-patient.eu
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”.