Entries by nadzor

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 […]

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 […]

SMA NBS Alliance published whitepaper

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

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). […]

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/

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 […]

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 […]

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

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 […]