On the second day, the representatives of CF “Sister Dalila” took part in a practical seminar on “Foresight study 2030”. Together with the European community, we have considered the trends of political, economic, socio-cultural, technological, legal / ethical and environmental issues that have occurred over the past 10 years that have already changed, and which may still change over the next 10 years.
All participants were divided into separate working groups. We were faced with several tasks: to share important positive or negative experiences and practices in the field of rare diseases that we have already gained over the past 20 years at the national and European levels. We also presented our vision, desires and ideas about the position of orphan patients for the last 20 years. We understand that because of different political systems, whether closed or open, there are countries, for example, United Kingdom, where patient organizations have been heard and play an important role in lawmaking processes. In Romania, there is a network of centers for rare diseases, so their patients are more secure and well-informed, which contributes to the improvement of the quality of life. And they started with the project.
We presented the situation in Ukraine, both in relation to pulmonary hypertension and to other orphan nosologies. We talked about the first effective healthcare reform within the last 28 years of independence. We expressed the hope that the newly elected president would preserve and support this titanic work of the Ministry of Health, NGOs, patients, which in the first place is so important for the development of healthcare in Ukraine, orphan patients in particular.
We sincerely thank the Embassy of Ukraine in Romania for the provided support .