Executive committee (EC) members

Boris Sustarsic was born in 1945 in Ljubljana, the capital of Slovenia. His life has been crucially marked with disability which has broken out at the age of two, when he did not manage to stabilize gait the way other children do. He suffers from a hereditary progressive neuromuscular disorder (NMD), which has put him into a wheelchair when he was eleven.

Despite his disability, with a great help of his parents, he managed to finish his primary school education and to graduate from a secondary school to be able to study at university. He registered at the University of Ljubljana, where he studied English and French for two years but he abandoned his studies in 1966 when he was appointed chairman of the newly founded Muscular Dystrophy Association of Yugoslavia, and three years later of the Slovenian Association as well. All his work has ever since been subjected to the organized activities in the Slovene association (Muscular Dystrophy Association of Slovenia) and to co-operation with other groups and associations of disabled people. For many years he has been forming a system of a strong and branched out, economically strong and humane policy of taking care of people with special needs. The capability of linking separate spheres in new unities has brought him as far as to being the chairman of the National council of the disabled persons’ associations of Slovenia, where he has essentially contributed to the way and extent of co-operation among different groups of the disabled.

His life has been filled with a unique way of accepting his own disability. He has decided to gain specific knowledge on the matter to realize numerous ideas and realize them to make them reachable for the disabled. In 1980 he established a company for disabled, called Birografika Bori in Ljubljana, and in 1987 another company in Izola, called Dom dva topola. He strenghtened the co-operation among Slovene disabled’ groups which present the strongest and loudest adversary in the discussions with the government regarding the conditions and interest of the disabled in the society. He was chairman of the Yugoslavian Association of companies for employing disabled people and now he is on duty in the Slovene Association. He contributed to the fact that in the late 1980s the Slovenian companies for employing disabled people turned into a market economy, with a distinctive systematic and financial support of the government.

Boris Sustarsic has definitely become an expert on effective management in the field of disability affairs, where he combines practical and theoretical work as well as motivation of numerous social inovations. He is the author and coauthor of many articles, presentations and radio broadcasts considering the disabled. His contribution to the still valid development strategy for the disability affairs, approved by the Slovene government and parliament in 1992. He was namely appointed the chairman of the board that drew the document up by the Slovene government.

Being the manager of Birografika Bori he realized, in 1989 already, the importance of digital technology for the colour and black and white printing, as well as for data-processing together with use of intelligent systems. This way he essentially influenced on the development of this company for the disabled that employs the disabled that are least likely to be able to get a job due to their disability.

In 1992 he was elected in to the National council of the Republic of Slovenia and was re-elected in the year 1997, 2007 and again in 2017. Beside the general state affairs he puts much effort into arranging the state regulations in favour of a better life for the disabled and the elderly residents. He strives to keep Slovenia a social state in the sense of the second article of the constitution and to form a social politics which would ensure the disabled people an adequate support.

He is very active in the field of legislation. There is no systematic or definite legal solution in favour of disabled’ companies to which he wouldn’t have contributed at all. The importance of his work is also visible in the fact that he was awarded for the achieved success in the field of disability affairs by the Ministry of Labour, Family, Social Affairs and Equal Opportunities. With his work he proves that the activities of people with NMD to solve their own social scrapes are the first and main principle of a successful social integration.

Tomislav Goll, computer programmer, graphic designer, journalist and musical editor, is EAMDA Secretary General (European Muscular Dystrophy Association), SDDH Vice president and member of the board (National Neuromuscular Association). He is also Vice president and member of the board of local Association for Neuromuscular disorder, Vice president of City Committee for persons with disability in Slavonski Brod, President of local Theatre – Slavonski Brod, Director and musical editor of Radio92FM community radio in Slavonski Brod, Croatia. With more than 35 years of experience in local community and civil society, Tomislav Goll is not only a member, he is a founder of several associations. In his work he was awarded several times: Winner of prestige Shaklee Award 2004. Highest USA Award for work with children with disabilities, Winner of County award 2006. As person of the year for all humanitarian work in civil society, special care for persons with disability and promotion of credit and fame of Brodsko posavska County in country and international, Winner of third prize WHO (World Heath Organization) photo contents in 2004. Digital photography of Down-syndrome boy – Faster then You, His designee of Poster “Bicycles” win international award in Campaign against women violation in 2001, and for web designee – Winner of prime Minister WEB 2005 award for web portal of Croatian National Neuromuscular Association – highest web award in Croatia. As person with disability with neuromuscular disorder his work was always development of civil society organizations, establishing partnerships among different sectors and promoting public participation in decision making. For example his work on the borders between young disabled people, youth trainers, youth policy and researchers, and continued work on training programs for associations. He served as member of EU-Croatia Joint Consultative Committee from beginning, in period 2006-2011. Tomislav Goll prepared report on following topic: Reform of the Croatian pension system – Focus on disabled person’s pensions. Over the last 10 years he has been intensively involved in European integration, fluent in English and writing English.
With the well-known way of media speech, he has spent the decades on radio program, leaving behind love, longing, envy, and unmerited songs. He built his status for years in the sweat and hard work. Rock’n’roll is his mission, nicknamed ‘The Good Spirit of Rock’n’roll’, by city bands because his constant rock promotion of local music at all media. He has one of the biggest collections of vinyl in this part of Croatian. If he is not in front of the stage then he is on it as the manager…

Ivanka Jovanovic is Vice-President of EAMDA. She is very active in the Serbian and in the international disability movement. In Serbian disability movement her key roll is the Executive Director position of National organization of Persons with Disabilities of Serbia (NOOIS) and a Research assistant position in the Muscular Dystrophy Association of Serbia.

She is a member in Serbian JCC (EU-Serbia Civil Society Joint Consultative Committee) for the social economic development field, representative of NOOIS in EDF-u (European Disability forum), representative of NOOIS in DPI (Disability People International) and member of the Council for disability issues of the Government of the Republic of Serbia.

She has university level degree – Faculty for political science, University of Belgrade, Diploma – Graduated journalist. She is certified trainer for NGO menagement, with vast experience in other different fields like: disability policy and situation human rights advocacy for people with disabilities, facilitating of the conferences, business meetings etc, needs assessments at organizations level and capacity building, monitoring and evaluation of the projects and work of organizations, providing consultancy services.

Ivanka Jovanovic is author or co-author of many manuals and research articles. She is the first contact for cooperation between EAMDA and EFNA.

Dona Jandová has a degree in English and Czech language from the Charles University in Prague. She is married and has one adult son. Since 2003 she has been working for the Czech Muscular Dystrophy Association as the chief editor of theirs magazine and as a coordinator.

In 2011 she was elected as a member of Executive Committee of EAMDA and from 2013 she is also one of its vice presidents. She has a vast experience in the field of nonprofit and patient organizations, where she strives for implementation of multidisciplinary care for persons with neuromuscular diseases in practice. She has established contacts with different international organizations and participated at international conferences and workshops. She has translated a lot of documents and informational materials about neuromuscular diseases into Czech.

She represent EAMDA at EURORDIS which is a unique, non-profit alliance of over 700 rare disease patient organizations from more than 60 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe. By participating at its conferences, workshops and general assembly she would like to empower neuromuscular disorders patient groups and raise public rare disease awareness on international level.

In her private life she enjoys travelling, reading and staying together with her family.

She would like to promote the patients centered care and raise the awareness of the specific needs of persons with neuromuscular disorders on all levels.

Michal Rataj graduated from the Faculty of Computer Science of the University of Silesia, profession IT specialist. As a patient he is actively involved in patient organizations for over 20 years. He is Board Member of the Polish Neuromuscular Diseases Association (PTCHNM) and European Patients Forum (EPF), and Patients and Consumers Working Party (PCWP) in European Medicines Agency (EMA). He is co-organizer of many national conferences for patients with muscular dystrophy. In private life he is enthusiast of new technology and modern devices facilitating mobility.

From 2014 he is involved in EFP in working group on access (WGA). During two years with WGA he prepared a draft ‘Universal Health Coverage For All’, the campaign which is an opportunity to raise awareness about the barriers patients face in accessing healthcare, and to build on current political momentum – including the UN Sustainable Development Goals for health – to foster more EU cooperation on access to healthcare. He is also a member of task force on patient safety where the main role is dedicated to – patient and family empowerment and patient safety.

Being an active member of EPF as a EAMDA representative is very crucial and it is also a big honor, thank to this fact our voice is stronger and also helps raising awareness about the problems of patients with Muscular dystrophy across the Europe. Sharing experiences and cooperation with another group of patients with chronic and rare diseases is a good chance to learn from each other.

He is the first contact for cooperation between EAMDA and EPF.

Luka Zaharija is a Professor of Information technology and History, IT expert and graduated Master of Business administration (MBA) on Cotrugli business school. Working in the Clinical Hospital Center Rijeka as a major IT advisor in software support. Activist for rights of people with disability and participant in creating a better living standard for people with disabilities as the president of regional association of people with neuromuscular disorders. Member of executive committee of Croatian muscular dystrophy association – SDDH and former president of Croatian muscular dystrophy association – SDDH Youth forum, president of EAMDA Youth from 2010, EAMDA Executive comity member from 2013. He is a representative of people with disability in the Primorsko-goranska regional advisor council, the government representative of people with disability in the regional counseling board and president of the local school comity. An active politician- president of local political party and president of the local county council.

He was born in 16. November in 1985. and diagnosed the muscular dystrophy in age of 4. Regular student in hometown elementary school, secondary school of economy In Rijeka finished as the student of the generation. College time (2004-2012) brought more interests and responsibilities- involvement in the activities of the local community and politics.