POLISH HUNTINGTON’S DISEASE ASSOCIATION
INTERNATIONAL VISEGRAD FUND 
Danuta Lis — President of the Polish Huntington’s Disease Association.
She has been a member of the Association since 2005, which is when she found out that a family she has been friends with was struggling with the disease. In 2006 – 2008 she was the Chair of the Association's Audit Committee.
Since 2008 she has been the President, successfully leading the Association by introducing a lot of beneficial developments and strengthening its position in Poland and abroad. She undertakes continuous training and education by attending various courses and workshops and incrementing her knowledge and competence in the area of managing non-governmental organisations. She has completed, among others, the "NGO Master” training for managers of NGOs about implementing European norms and standards into the functioning of such organisations.
Since 2011 she has been a board member of the International Huntington Association (IHA) which is a federation of national health agencies that share the common concern for individuals diagnosed with Huntington’s disease all over the world. She has been the Treasurer of the Board in the Association.
She has been actively involved in the functioning of the Association for many years, providing the Association with its office space in Warsaw too.
She has come up with numerous innovative ideas, such as the organisation of rehabilitation camps and holiday trips for HD sufferers and their families, distribution of dietary supplements, formation of support groups, cooperation between various health agencies and the development of NGOs operating in good cause.
She has also participated in the meetings and debates organised by the Rare Diseases Committee in the Ministry of Health, the purpose of which was to compile a document which would comprehensively put together important information concerning patients suffering from such diseases. She has participated in the drafting and implementation of the National Scheme for the Treatment of Rare Diseases. She has been actively fighting for the implementation of a reimbursement scheme for HD drugs, with the help of numerous supporters. These attempts ended up in success and the Ministry of Health decided to reimburse the cost of Tetmodis for patients suffering from HD. She has been working hard towards the improvement of the quality of life of HD sufferers and their families. She has been actively seeking support for this cause in various communities. She has also been responsible for raising the funds for the ongoing activities of the Association. She takes part in various innovative projects the aim of which is to improve the quality of life of HD sufferers. Currently, she has been busy working on the international project entitled "Visegrád Group countries contribution to the development of the European Reference Network on Rare Neurological Diseases". Her greatest ambition is to create and build a professional care and rehabilitation centre for Huntington’s disease patients in Poland.
