New EAMDA scientific publication published

We are glad to announce that new EAMDA scientific publication on EAMDA 46th AGA in Zagreb has been published. You can find it under the Publication section of our webpage and you are welcome to download it for free. If you prefer to receive also hard copies, do not hesitate to get in touch with us.

EAMDA 47th AGA successfully finished

EAMDA 47th Annual General Assembly (AGA) took place between 20th and 23rd September, 2018 in Prague, Czech Republic (Clarion Congress Hotel). The event has been traditionally divided into three parts: medical, social and administrative part.

Within the medical part, top experts in the field of neuromuscular disorders (NMD) from all over the Europe have been presented. They showed innovative approaches in eliminating the secondary consequences of the underlying disorder, as well as the modern methods of the treatment. Thus, the program of medical part was divided into several sections: Diagnosis and new therapies in NMD, New clinical trials and approach in NMD, Cardiological and respiratory care, and Restorative rehabilitation and treatment. Medical doctors, scientists and other experts presented the new therapies currently available for people with NMD, clinical studies and research news, new possible treatments as well as patient advocating and improvement of quality of life for people with NMD on multidisciplinary level.

The social part again demonstrated the importance of its integration in the program, as it connects complementary with medical part. In the social part people with NMD from different countries have been presented. They showed that despite of high degree of disability and diversity of health-social conditions they successfully develop their intellectual potential. An important event organized within the social part of the program was the implementation of a round table on the challenges associated with the introduction of new NMD treatment methods in different European countries. There is no secret that new possibilities of etiology treatment are becoming available to treat NMD, and that a realistic prediction of the genetic treatment arrival is being on the way. Some European countries are already among the leading ones in Europe by introducing new forms of treatment, while others are developing infrastructure to start treatment with them. The great challenge of financing expensive drugs for rare diseases, among which NMD is definitely taking place, has been also stressed out. Every country in the EU is putting efforts to solve the problem of financing new therapies, and in EAMDA we are convinced that a reasonable solution can only be found by persevering in a consensual dialogue involving all participants: insurance companies, medical doctors, pharmaceutical industry and representatives of people with NMD. In many countries mentioned linking form of the dialogue already appears to be the most effective.

The administrative part has been organized within parallel section of the conference, where an AGA as the highest EAMDA statutory defined organ has been held, followed by two EAMDA executive meetings.

Over 120 participants took part in the event, namely delegates, representatives of NMD associations and lecturers from eleven European countries (Slovenia, Slovakia, Poland, Croatia, Serbia, Bulgaria, Italy, France, Switzerland, Turkey and the Czech Republic).

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 practice of the best clinicians from all over the world. It is equally important that the information available to families is understandable, contemporary, and based upon the latest research.

This year’s activities will include conferences to update clinicians and other healthcare professionals, the publication of the updated DMD Family Guide, and the release of a series of educational videos, understandable for young people so they can become advocates of their own health. Education is the first step to implement the latest Standards of Care, and make Duchenne dreams come true!

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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 the life and work of people with muscular dystrophy ever since 1969 when, together with his supporters, he established the organisation which was then named the “Association of People with Muscular and Neuromuscular Disorders of Slovenia”. His life was very early fatefully marked by disability. Nevertheless, together with his brother Andrej, he accepted his disability as a challenge and an imperative that led him through his life.

He soon noticed that besides social organisation people with neuromuscular disorders (NMD) need employment in order to become equal citizens also in economic terms. Development of information technology enabled people with the most severe disabilities to enter the labour market. Thus, in 1997, on Šuštaršič’s initiative, the Muscular Dystrophy Association of Slovenia established company for employing disabled people “Birografika BORI”, which developed from a small print shop with only one photocopy machine into one of the most modern graphics companies in Slovenia employing about 100 workers.

Based on his own experience, Boris Šuštaršič was aware of the importance of coastal group restorative rehabilitation for people with NMD. In 1985, the Muscular Dystrophy Association of Slovenia bought the premises of the former hospital in the coastal town of Izola and thus set the foundation of the centre for developing the programme of restorative rehabilitation for people with NMD. Today, the centre operates under the name “Dom dva topola” and is one of the biggest medical rehabilitation centres for people with NMD in this part of Europe, both in terms of equipment and service quality.

More than forty years ago, Boris Šuštaršič realised that political support is required for the development of disability protection in Slovenia. That is why he became actively engaged in the former Yugoslav and Slovenian political sphere. He helped establish muscular dystrophy organisations in former Yugoslav republics and constantly maintained close contacts with them also after the dissolution of the joint state.

He also participated in political activities as a representative of social care interest groups in the National Council of the Republic of Slovenia where he served as a national councillor for three mandates and also in the last term of office. He played a decisive role in designing and development of the lottery games field. He was the initiator and the actual creator of the Foundation for Financing of Disability and Humanitarian Organisations of the Republic of Slovenia (FIHO) where he made an immense contribution to the preservation of independent and harmonised financing of disability and humanitarian organisations.

He was aware of the importance of employing disabled people in various economic sectors and therefore undertook activities through “Birografika BORI” to establish the Alliance of Companies Employing Disabled People of Slovenia which today unites 143 companies employing disabled people, including “Dom dva topola”, one of the two companies established by the Muscular Dystrophy Association of Slovenia.

In the field of disability care there is no other person who did more for Slovenian disabled people during one’s lifetime than Boriš Šuštaršič. He was a true visionary and a creator of excellent realisable ideas. Also in the field of economy it would be hard to find someone who had made such an important contribution: he was surely among the top managers in Slovenia.

Boris Šuštaršič actively contributed to integrating different groups of disabled people at the European level. He was one of the co-founders of the European Alliance of Neuromuscular Disorders (EAMDA) and its President since 2008 when EAMDA’s headquarters was moved from Malta to Slovenia. He was also an active representative of Slovenian disabled people in the European Disability Forum (EDF). Many of his innovative solutions in the field of social care were adopted by numerous European countries and transposed into their national legislation.

On his path to successes he was often met with benevolent reactions from those who envied him his achievements. He had quite a few of such opponents, but this only proves the old saying: “a cloud of dust follows a good horse”.

We have lost a great leader, mentor and colleague, whose charisma and energy filled us with optimism for dealing constructively with all the challenges that arise in our work. At the same time he gave us the ability to think analytically and separate the wheat from the chaff not only when it comes to social and disability policy but also in our own life and work.

The members and colleagues in the Muscular Dystrophy Association of Slovenia will continue the vision set by our late President who believed that the desired goals can be realised and that one should never yield in the face of difficulties. This maxim will remain our imperative in the future operation of the Association.

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 is called rare if not more than 5 out of 10,000 human beings are affected. The award shall promote creative scientific ideas, contribute to a better understanding of the biological mechanisms leading to rare diseases and to the development of new diagnostic and/or therapeutic strategies.

The application is open to single persons or groups of scientists with at least one member being affiliated with a research institution located in Germany. Junior researchers are explicitly encouraged to apply. The call for proposals is available HERE (deadline: 31 July 2018). For more information on the Care-for-Rare Foundation, please visit our website: http://www.care-for-rare.org/en.

We’re on Facebook – follow us!

We are happy to announce that we are on Facebook. You are welcome to join us there.

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 possible and on the other side to provide you with key information related to our activities. Your feedback would be much appreciated and please send it to info (at) eamda.eu