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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 […]
We are happy to introduce you TISMA – Together in SMA web page which is dedicated to SMA awareness https://hcp.togetherinsma.eu/
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 […]
Background and scope of guidance This guidance is for people, including children, who are at very high risk of severe illness from coronavirus (COVID-19) because of an underlying health condition, and for their family, friends and carers. It is intended for use in situations where the extremely vulnerable person is living in their own home, […]
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, […]
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 […]
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 […]
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 […]
When? From 14th to 21st July 2019 We are pleased to invite you to beautiful and sunny Croatia, to be part of EAMDA YOUTH CAMP 2019, the seven-day Camp for young people with neuromuscular disorders in Mare Center, Rovinj, Croatia from 14th to 21th July 2019. Where? Rovinj, Croatia Rovinj is a city in Croatia […]
Duchenne and You is a resource dedicated to those who have had their lives touched by Duchenne muscular dystrophy. Visit the site http://duchenneandyou.eu/
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