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Recorded conversation 29 March, 15:30

Ra­re: How do or­phan pa­ti­ents fight for the­ir right to a full li­fe?

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The discussion will be held in Ukrainian with sign language interpretation. The interpretation is provided by the Inclusively Friendly project.
The discussion will be held in Ukrainian with sign language interpretation. The interpretation is provided by the Inclusively Friendly project.
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Orphan diseases (such as hereditary immune deficiencies) or undiagnosed conditions (such as FAS) have an incidence of less than one case per 2000 people. Most of these illnesses are genetic and incurable. Thanks to modern treatment methods, patients with a rare condition can live a full life by undergoing therapy and rehabilitation. But hardly any Ukrainian family can afford such treatment, although there are government programmes which provide the necessary medicine to those who need it.

But does it really work like that? What is the situation regarding the provision of care to patients in Ukraine today? And how can international experience prove useful?

Participants

Andriy Kulykov

journalist

Aksana Filipishyna

Representative of the Children's and Family Rights Ombudsman

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

Iryna Suslova

MP in the 8th Verkhovna Rada

CommunicateCommunicate

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RIGHTS NOW! programme discussion

This year, the topic of the festival’s Human Rights Programme is the new reality of the corona crisis. Together with professionals, we will discuss changes to the various domains of human life, and talk about how to protect our right to health.

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Learn more about the event on DOCUDAYS UA