Entries by nadzor

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Beyond the borders of your abilities – mission possible!

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 […]

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:

WMS guidelines on COVID-19 for NMD community – update June 15, 2020

COVID-19 and people with neuromuscular disorders: World Muscle Society position and advice The category of neuromuscular disease (NMD) covers a wide range of different diagnoses with widely varying levels of disability even in people with the same diagnosis. It is difficult, therefore to make specific recommendations that apply generally. The following are recommendations that apply […]

WMS guidelines on COVID-19 for NMD community – update May 11, 2020

For update 11.5.2020 follow this link (for translations visit https://www.worldmusclesociety.org/news/view/150 ) The category of neuromuscular disease (NMD) covers a wide range of different diagnoses with widely varying levels of disability even in people with the same diagnosis. It is difficult, therefore to make specific recommendations that apply generally. The following are recommendations that apply to […]

TISMA – Together in SMA

We are happy to introduce you TISMA – Together in SMA web page which is dedicated to SMA awareness https://hcp.togetherinsma.eu/

World Muscle Society guidelines on COVID-19 for NMD community

For update 20.4.2020 follow this link (for translations visit https://ern-euro-nmd.eu/covid-19-and-people-with-neuromuscular-disorders-world-muscle-society-position-and-advice/ ) The category of neuromuscular disease (NMD) covers a wide range of different diagnoses with widely varying levels of disability even in people with the same diagnosis. It is difficult, therefore to make specific recommendations that apply generally. The following are recommendations that apply to […]

Coronavirus (COVID-19) information for people with NMD

As there are currently no guidelines available for people with NMD on Coronavirus (COVID-19), we would like to share some general information on the disease with focus on some NMD specific diseases. People with special health care needs, especially those with immune or neuromuscular problems, or with chronic illnesses, such as asthma, diabetes, or cancer, […]

Jana Popova is the recipient of the EURORDIS Black Pearl Award 2020

On 18th February 2020, Jana Popova, EAMDA EC member, attended the EURORDIS Black Pearl Awards. The event was organized to celebrate the work of decision makers, scientists, patients advocates and volunteers. This was unique opportunity to exchange experience and to establish cooperation with many important figures in the field of rare diseases. The evening ended […]