Entries by nadzor

Today is World Duchenne Awareness Day

Everybody around the world will raise awareness for Duchenne Muscular Dystrophy on September 7th. This year, the WDAD theme is Standards of Care. There is a compelling need to ensure that wherever they are in the world, individuals affected by this condition can benefit from a Standard of Care that is informed by the best […]

September 7, 2018 by

In memoriam: Boris Sustarsic

Boris Šuštaršič, the founder of the Muscular Dystrophy Association of Slovenia, passed away on Saturday, 25 August 2018, in Izola. We are deeply saddened and shocked by the sad news, having hoped his health would improve despite the illness that he had suffered for the past few weeks. His name has been strongly connected with […]

August 27, 2018 by

Care-for-Rare Science Award 2018

The Care-for-Rare Foundation at the Dr. von Hauner Children’s Hospital of the Ludwig-Maximilians-Universität München launches again this year the Care-for-Rare Science Award 2018. The Care-for-Rare Science Award is endowed with 50,000 Euro and should give scientists the chance to initiate a basic or a clinical research project in the field of rare diseases. A disease […]

July 3, 2018 by

HIBM – GNE myopathy Istanbul meeting

Neuromuscular disorders association of Turkey is organizing the HIBM – GNE myopathy Istanbul meeting which will be held in Istanbul between 7th and 8th May, 2018. For meeting program and other details please visit the Neuromuscular disorders association of Turkey.

April 25, 2018 by

2nd Slovene symposium on Neuromuscular diseases

We invite you to attend the 2nd Slovene symposium on Neuromuscular diseases with the following title “Duchenne’s Muscular Dystrophy – new Perspectives”. The event will be held in Ljubljana on 7th of September 2018, and will focus on the new advances in treatment of Duchenne’s Muscular Dystrophy (DMD). The focus will be on the new guidelines for […]

April 25, 2018 by

BNMDA Summer Camp 2018

Bulgarian Association for Neuromuscular Diseases organizes Annual Summer Camp for people with Neuromuscular disorders. The camp is appropriate for people with NMD from all ages. The Summer Camp will start on 23rd of July 2018 and it will take place in Minkovi Bani, hotel complex in Montana Province, northwestern part of Bulgaria. The hotel complex […]

March 13, 2018 by

The MDA RIDE Celebrates 10 Years: A Success Story

The MDA RIDE is a group of people who decided to help persons with neuromuscular disorders in the Czech Republic. The MDA RIDE is a charity event associated with a public fundraising to help individuals with muscular dystrophy associated in the Muscular Dystrophy Association in the CZ (AMD ČR) and the Parent Project. MDA RIDE […]

March 5, 2018 by

New EAMDA webpage

After some time we finally managed to launche a new EAMDA webpage. Our direction was to be the page for user to get general information about our work, our connections to European neuromuscular disorders associations and other partners that we are cooperating with. We have would also efforts to create page visually as attractive as […]

March 5, 2018 by