Transcript Role of Patient Organisations` Networks, Marta Kozireva

The Latvian Umbrella Body For
Disability and Patient's
Organisations
SUSTENTO
Role of
patient organisations'
networks
Marta Kozireva
Chair Person of the Latvian Kidney Patient Association
Board Member of SUSTENTO
Aim of SUSTENTO
We work towards governmental
policy for people with disabilities
and chronic diseases, which
▲Provide human rights
▲Prevent discrimination
SUSTENTO
was founded in 2002
At the moment SUSTENTO unites 31
organisations, members of these organisations are
people with different kinds of disabilities and chronic
diseases.
We represent interests of about 50 000 patients in
Latvia
Challenges that SUSTENTO had
in the set up phase
▲People did not believe that common work
could be fruitful and useful for the single
organisations
▲People saw this coalition more as a
restriction of their freedom
▲Most organisations were sure that they
were able to represent their work on
their own – no need for additional
assistance
Structure of
Organisation
31 national disability
and patient
organisations
GA
(1 time per year)
Meeting of Representatives' - 1
representative from each
organisation (meeting 1 time per 2
months)
Board
7 members
Secretariat
Our activities
Patient`s rights
advocacy and
representation
PwD rights advocacy
and representation
Antidiscrimination
Antidiscrimination
Equal rights
Equal rights to treatment
Peer support
Capacity building
Involvement in Health
policy planning
Circulation of information
Cooperation with networks in
Latvia, EU and Global
The capacity of SUSTENTO
Parliament, Ministry of Health,
Welfare, Education, Transport
National organisations with regional network
Direct communication
with target groups
Direct communication
with regional
institutions
Benefits we got from the fact of
uniting into a network
▲We are able to influence and participate in
legislative matters affecting human health
and social welfare laws under construction
▲Member organisations establishing direct
and feedback communication of
SUSTENTO
What we are doing...
Regular meetings with Ministry of Health;
What we are doing...
Regular surveys on availability and quality of
health services;
What we are doing...
Exchanges information from member
organisations and other patient organisations;
What we are doing...
Annual Conference of the patients
organisations;
What we are doing...
Financial amounts to EUR 700's for organisation
activities.
Thank you for
attention!
www.sustento.lv