11.19.2015 Scientific practical conference “Rare diseases in medical practice” and the exhibition “Rare but not disenfranchised ” was held in Lviv

Attendees of the event: Head of the Ukrainian Medical Association (UMA) A.J.Bazylevych, representative of LRSA’s DOH A.B.Holdun, MD, professor, director of clinical genetics department G.R. Akopian, Ukrainian MP of VII convocation V.V.Dudka, and public organisation  “Ukrainian rare diseases”.

The conference was opened by the UMA’s Head,A.J.Bazylevych, who claimed that health care should be priority for the state, that’s why this sector should get provided the most money from the state budget for maintaining the health of the nation. However, the state prefers others spheres rather than medicine.

Representative of LRSA’s DOH, A.B.Holdun started with the fact that thanks to patient organizations in Lviv region (LCCF of “Sister Delila”, NGO “Association of rare disease in Ukraine – Pulmonary Hypertension”) and their lobbying of issue on free providing patients with pulmonary hypertension with medicines, the results were achieved, namely approval of the Regional Program of improvement of patients’ with pulmonary hypertension health care in the Lviv region in 2015-2017 years. However, these are isolated cases, he said, as the state ignores the real need to fund treatment of patients with rare diseases in Lviv region, by providing medical subsidy in the form of lack of funds, through which the approval of other regional programs is impossible.

MD, professor, director of clinical genetics department G.R. Akopian described the occurrence of hereditary diseases, due to effects on the genetic level of Ukraine. She explained that during the existence of man on Earth, its genes mutated, that is, each person has not only parent’s genes, but also the genes of past generations. For example, the mother and father follow a healthy lifestyle and do sport, but they have a sick child. The reason for this is the presence in a born child the previous generations’ gene – the gene pool of Ukraine, which provokes hereditary disease. All other diseases (non-hereditary) are called multifactorial, they arise through the taking of low-quality food products that contain chemical impurities that triggers the disease. That is, if the state increase social guarantees, people will eat quality products, making chemistry’s impact on the body impossible.

Ukrainian MP of VII convocation V.V.Dudka noticed patient organizations in the Lviv region (LCCF of “Sister Delilah”, NGO “Association of rare disease in Ukraine – Pulmonary Hypertension”), as few months ago when he was in Lviv he saw billboards on patients with pulmonary hypertension and their need of free medicines, and then learned of the approval of the Regional Program of improvement of patients’ with pulmonary hypertension health care in the Lviv region in 2015-2017 years. Also he emphasized the importance of approval of the Law “On rare diseases”, thanks to which patients with rare diseases would be able to defend their rights and express requirements in government offices.

Each participant was able to view the photo exhibition “Rare, but not disenfranchised” and to communicate, share successes, challenges, experiences.

We are optimistic that such meetings won’t be in vain and officials will not only see, but hear the problems of patients with rare diseases, including patients with pulmonary hypertension of all types !!!

More photos and presentation of MD, professor, director of clinical genetics department G.R. Akopian are here: https://www.facebook.com/poryatunok/photos/pcb.1709022009329159/1709020412662652/?type=3&theater