About the conference

The primary target of the Seminar is pointing out the barriers in Poland in access to medical  technologies used in rare and ultra rare diseases treatment and discussion about ways to improve this condition. We invited to participate in the Seminar doctors of different specializations (clinical doctors as well as scientists interested in Seminar topics and especially doctors specialized in treatment of rare diseases). The event was dedicated as well as to representatives of the Ministry of Health, the National Health Fund, the Health Technology Assessment Organization, insurance companies, local governments, central councils, media and representatives of patients organizations, brand organizations and academics.

Under the following link you may find the Summary of the Seminar

You can also watch the video from the Seminar!

Maciej Nowicki, MD – Innovations in the rare diseases treatment, orphan drugs – evaluation of access in Poland – opening of the Seminar

proffesor Zbigniew Szawarski – Ethic, policy and rare diseases

doctor Jacek Gliński – the National Plan For The Rare Diseases – Road Map

Gabriela Ofierska-Sujkowska – Attitude of the HTA to value evaluation of orphan drugs based on previous recommendations

proffesor Wiesław Jędrzejczak – Orphan diseases in hematology

Robert Plisko – Parts of guaranteed benefits basket in Poland, enabling to access to rare diseases diagnostics and treatment in Poland – actual status

Paweł Wójtowicz – Barriers in access to medical benefits for those who suffer from cystic fibrosis in Poland

Marcin Stobiecki, MD – Hereditary angioedema, current treatment guidelines and availability of medicines

proffesor Barbara Jarząb – Thyroid cancer refractory to treatment as an example of rare disease and the possibility of pharmacological therapy

Krzysztof Łanda, MD – The proposed changes in the reimbursement law – a dedicated budget for drugs rated in egalitarian approach – justification for prices

Krzysztof Łanda, MD – Activity of the Watch Health Care Foundation; monitoring of management performance of guaranteed benefits basket in Poland

Discussion focused on opportunities to improve access to services used in the treatment of rare- and ultra rare diseases.