A working meeting was held with representatives of orphan nosologies: tuberous sclerosis, Myopathy Duchenne, pulmonary hypertension, with the participation of a doctor and a nutritionist.

We analyzed the situations that we had 5 years ago, what we have now, and talked about what should be in 5 years.

The problems that patients with various rare nosologies face are similar: lack of early diagnosis, lack of qualified specialists, absence  of a state patient register, lack or poor availability of medical treatment, lack of comprehensive rehab programs and psychological support for patients and their families. Also, there is a need for professional legal support, establishing cooperation with respective departments and Ministry of Health.

It was valuable and important for us to hear the vision and comments from a doctor. We thank the pediatrician for her participation, the desire to work, change and help orphan patients. Also, thanks to the nutritionist who explained the interesting moments of alternative treatments, she shared her story, one more opportunity and a tool for improving patient’s condition.

We have found the answers to important questions by joining forces now. We invite the orphan organizations of Lviv Region, doctors and patrons, officials and deputies to a constructive dialogue.