Entries by nadzor

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 […]

July 1, 2020 by

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 […]

June 12, 2020 by

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/

April 30, 2020 by

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 […]

April 1, 2020 by

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, […]

March 19, 2020 by

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 […]

March 1, 2020 by

Successful EAMDA 7th EC

At the seaside of Slovenia coast, rehabilitation center Dva topola hosted the EAMDA 7th EC meeting between 18th and 20th October, 2019. Besides executive committee members presented, we had an honor to host respected guests from European Federation of Neurological Associations (EFNA) and World Duchenne organization, as well as we were really happy to have […]

October 22, 2019 by

7th EC meeting 2019 in Izola, Slovenia

We are organizing an extended EAMDA executive committee (EC) meeting between October 18 and 20, 2019, at the Rehabilitation Center in Izola, Slovenia. The topic of the meeting will be related to the AGA in 2020, the construction of educational programs for people with NMD and the substantive preparation of EAMDA strategic development guidelines for […]

September 27, 2019 by