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

Duration
60’
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
The discussion will be held in Ukrainian with sign language interpretation. The sign language interpretation is provided by the Inclusively Friendly project.

DOCUSPACE ONLINE CINEMA
Sign language interpretation
Watch event
Monday
29 March 2021
15:30
19 INTERNATIONAL HUMAN RIGHTS DOCUMENTARY FILM FESTIVAL
25 – 
March
3
April 2022
The new corona crisis reality: What next?
RIGHTS NOW!
27 March 2021
The new corona crisis reality: What next?
Duration
60’
RIGHTS NOW!
27 March 2021
Myths about the immune system: How to stick to common sense during a …
RIGHTS NOW!
28 March 2021
Myths about the immune system: How to stick to common sense during a pandemic?
Duration
60’
RIGHTS NOW!
28 March 2021
Pain medicine: How can we relieve the suffering of seriously ill peop…
RIGHTS NOW!
30 March 2021
Pain medicine: How can we relieve the suffering of seriously ill people?
Duration
60’
RIGHTS NOW!
30 March 2021
The construction of the Kakhovka Hydroelectric Power Station 2: Is di…
RIGHTS NOW!
31 March 2021
The construction of the Kakhovka Hydroelectric Power Station 2: Is disaster inevitable?
Duration
60’
RIGHTS NOW!
31 March 2021
How has the attitude towards mental health changed during the COVID-1…
RIGHTS NOW!
01 April 2021
How has the attitude towards mental health changed during the COVID-19 pandemic?
Duration
60’
RIGHTS NOW!
01 April 2021
The web of the social media: What are the traps that children get cau…
RIGHTS NOW!
01 April 2021
The web of the social media: What are the traps that children get caught in?
Duration
60’
RIGHTS NOW!
01 April 2021
Rehabilitation of the health of the victims of the armed conflict in …
RIGHTS NOW!
02 April 2021
Rehabilitation of the health of the victims of the armed conflict in the East and the occupation of Crimea: What does the government offer?
Duration
60’
RIGHTS NOW!
02 April 2021
Prison health care: What kind of help do ill inmates receive?
RIGHTS NOW!
03 April 2021
Prison health care: What kind of help do ill inmates receive?
Duration
60’
RIGHTS NOW!
03 April 2021
Sexual health: What do human rights have to do with it?
RIGHTS NOW!
04 April 2021
Sexual health: What do human rights have to do with it?
Duration
60’
RIGHTS NOW!
04 April 2021
The rights of mothers and fathers in maternity hospitals: Expectation…
RIGHTS NOW!
04 April 2021
The rights of mothers and fathers in maternity hospitals: Expectations and reality
Duration
60’
RIGHTS NOW!
04 April 2021