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

We work towards governmental policy for people with disabilities and chronic diseases, which

▲Provide human rights

▲Prevent discrimination

Aim of SUSTENTO

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

SUSTENTOwas founded in 2002

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

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

Structure of Organisation

Patient`s rights advocacy and representation

Our activities

PwD rights advocacy and representation

Antidiscrimination

Equal rights

Peer supportEqual rights to treatment

Antidiscrimination

Involvement in Health policy planning

Capacity building

Circulation of information

Cooperation with networks in Latvia, EU and Global

National organisations with regional network

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Direct communication with target groups

Direct communication with regional institutions

Parliament, Ministry of Health, Welfare, Education, Transport

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