Orphan diseases (such as hereditary immune deficiencies) or undiagnosed conditions (such as FAS) have the incidence of less than one case per 2,000 population. Most of these illnesses are genetic and incurable. But modern medicine allows for controlling the diseases under the condition of a timely diagnosis and the application of specific treatment. For patients with a rare condition to live a full life, they need to undergo systematic therapy and rehabilitation throughout their lives. Medicine and rehabilitation are expensive, and far from every Ukrainian family with such patients can afford it. In this case, the state, which guarantees the necessary medical treatment to all its citizens at the legislative level, should provide assistance. What is the situation with providing health care to patients with orphan diseases in Ukraine? Which problems do they face? What international experience in helping orphan patients could Ukraine adopt?
Organizers: Docudays NGO
Partners: UHHRU, Ukrainian Ombudsman
Speakers:
Yuriy Stepanovsky, Executive Director of the National Ukrainian Association of Children’s Immunology NGO.
Olha Bolshova, Head of the Children with FAS – It Concerns All of US NGO.
Oryna Chylutyan, lawyer at the Strategic Matters Centre of UHHRU.
Aksana Filipishyna, Representative of the Children's and Family Rights Ombudsman.
Iryna Suslova, MP in the 8th Verkhovna Rada.
Moderator: Andriy Kulykov, journalist
