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 non-profit 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 centred care and raise the awareness of the specific needs of persons with neuromuscular disorders on all levels.