Executive committee (EC) members

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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.

Jana Popova is PhD student and freelance journalist. In 2014, she graduated from the Faculty of Journalism and Mass Communication at the University of Sofia – “St. Kliment Ohridski”. Since 2011 she has been working as freelance journalist for different online media in Bulgaria. In 2016, she started her PhD program at Sofia University in the field of mass communication and book publishing. She is author on different articles about social policies, health system, education and different aspects of the daily life of people with neuromuscular disorders. Her personal interests are in the field of media development and digital communications.

As a patient with neuromuscular disorder, she is active member of the Bulgarian Association for Neuromuscular Diseases. She is involved in different activities, organized by the Bulgarian Association for Neuromuscular Diseases. She supports all Bulgarian patients’ organizations for neuromuscular disorders.

In October 2017, she became member of the EAMDA Executive Committee. She believes that her position as EAMDA EC member is great honor and incredible opportunity to develop the cooperation between different European patients’ organizations for neuromuscular disorders.

At the beginning of 2018 she became a member of the EPF Youth Group. Jana believes that her position as a member of the EPF Youth Group is big honor and it will help to increase the awareness about Neuromuscular Disorders in the society. She thinks that this is great opportunity to enhance the cooperation between different European organizations and to pay more attention on the problems of people with NMD. Jana believes that people with neuromuscular disorders should raise their voices and they should stay united if they want to improve their quality of life.

She is recipient of the EURORDIS Black Pearl Award for Young Patient Advocate in 2020.

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.

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