EAMDA announces partnership with ECMTF

We are pleased to announce the partnership between EAMDA and ECMTF (European Charcot Marie Tooth Federation), established through a signed Memorandum of Cooperation, for the benefit of the NMD community across Europe.

The European CMT Federation is a voluntary non-profit federation registered in Belgium, formed by national organizations supporting people living with Charcot Marie Tooth disease, a neuromuscular condition that affects 1 in 2500 people worldwide. ECMTF was founded in 2016 and has rapidly grown since then, extending its collaboration beyond the European border, towards USA, China or Israel.

Not only that EAMDA and ECMTF share common interests and goals, but we do consider that this cooperation will generate a lot of benefits for the people we represent, through the sharing of expertise and through common projects that will lead to a significant increase in the quality of life of people with neuromuscular disorders, CMT included.

This EAMDA-ECMTF partnership will also help us become a stronger and more influential voice for the NMD community, that will not only increase public awareness of these diseases, but also help us create a wider stakeholder involvement network.

“Together we are stronger” as our partners from The European Charcot Marie Tooth Federation (ECMTF) say!

/by

ProDGNE Kick-Off webinar

The ProDGNE consortium is pleased to invite you to the ProDGNE Kick-Off Webinar. In this webinar we will present ProDGNE, a 3 year transnational pre-clinical research project which brings together patients and researchers from Europe and Canada to develop an innovative therapeutic compound to treat GNE Myopathy (GNEM), a rare genetic muscle disease affecting young adults. Speakers: – Fabrizio Pertusati, School of Pharmacy and Pharmaceutical Sciences, Cardiff University, UK – Hanns Lochmüller, University of Ottawa Faculty of Medicine and The Ottawa Hospital Department of Medicine, Canada – Michela Onali, Gli Equilibristi HIBM, Italy – Paula Videira, Faculdade de Ciências e Tecnologia at Universidade NOVA de Lisboa, Portugal – Pierluigi Caboni, Department of Life and Environmental Sciences, University of Cagliari, Italy – Rüdiger Horstkörte, Medical Faculty, Martin-Luther University Halle-Wittenberg, Germany ProDGNE is funded in the framework of the European Joint Programme on Rare

Please follow this link to register. https://us02web.zoom.us/webinar/register/9616216054703/WN_AzgzW3uLSHmD-Tfe5mIxLA

 

/by

EAMDA has 2 new advocacy experts

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.

/by

New disease awareness website ‘Duchenne and you’

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).

/by

EAMDA established secretariat office

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/

/by

ERN on priorities and contra-indications for COVID-19 vaccinations

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.

/by

WHO: Clinical management of COVID-19

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

/by

Manifesto on the importance of vaccination for patients with chronic conditions

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

/by

Let’s Talk About Vaccination – EPF Patient Guide on vaccination

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.

Download our Patient Guide ‘Let’s Talk About Vaccination’.

/by