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 document.

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

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 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’.

EPF: A Virtual Event on COVID-19 Vaccines

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

COVID-19 and people with NMD

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”.

INTERNATIONAL CONFERENCE ON NMD 2020

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/

Beyond the borders of your abilities – mission possible!

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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 i Ti” (“Come and you”), traveling and visiting inaccessible places become possible for people with NMD. One of the latest exciting trips, which was organized by the association was in the cave “Bacho Kiro” in Dryanovo – Bulgarian city, situated in the Gabrovo Province.

Ms. Gergana Doychinova, founder of the voluntary organization “Ela i Ti” (“Come and you”), organized a visit to the cave “Bacho Kiro” for 15 people with neuromuscular disorders and other physical impairments. The main purpose was to provide an opportunity for people with NMD to visit a place, which is not accessible and impossible to reach in other circumstances. In this way they were able to go beyond the borders of their abilities and to feel the unique atmosphere of one of the most beautiful caves in Bulgaria. This incredible journey was funded by the project “Social Innovations”, established by Sofia Municipality. This visits was possible thanks to the support of many volunteers from the “Mountain rescue” team from Pazardzik Province and “Cave rescue” team as well as many other volunteers across the state. One of the main aims of Gergana and “Ela i Ti” (“Come and you”) is to create united network of support and cooperation between volunteers, who have the abilities to help people with neuromuscular disorders to reach inaccessible places. This happened during the visit to the cave “Bacho Kiro”. People with NMD were able to see the incredible species of animal population and to take a closer look to the amazing cave’s formations. This joyful experience was shared with the volunteers, who helped them to go beyond the borders of their physical abilities.

Ms. Gergana Doychinova shared the following for this unique experience: “The main purpose of this event is not only to show to people with NMD places, which is difficult to reach in other way, but to make them to feel part of a network of support, establishing new friendships. They are creating new friends and they are sharing their unique experience with other people.”. This helps to increase the adventurous spirit and to make people living with NMD to believe that everything is possible. This positive life perspective is helping people to feel part of a group of supporters and to believe in their dreams. The next stop for this incredible team of dreamers is Prohodna cave, which is famous for the nickname “The eyes of God”. Visiting such amazing places, people with neuromuscular disorders feel included in the society and they are happy to share their wonderful experience with other people. This kind of visits proves the facts that we are valuable members of the community and we deserve to live in a non-biased society, cooperating with supporters, like the volunteers from “Ela i Ti” (“Come and you”).

World Duchenne Awareness Day 2020

EAMDA is supporting activities towards awareness about Duchenne (DMD) and Becker Muscular Dystrophy. Please visit WDO webpage and see the wonderful video – Together, we are stronger: