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Patients’ perspective

13.10.2022

HARVINAISET-VERKOSTO

Järjestöjen yhteistyötä harvinaissairaiden hyväksi

The Finnish Network for Rare Diseases

Collaboration of organizations

for the benefit of

people living with rare diseases

www.harvinaiset.fi

www.harvinaiset.fi

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What?

  • PLWRD = Person(s) living with rare diseases

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  • A disease is rare when it affects less than 1 in 2 000 citizens

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  • 6 000 - 8 000 different rare diseases worldwide

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  • 80 % of rare diseases are genetic

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  • 70% of rare genetic diseases start in childhood

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www.harvinaiset.fi

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How much?

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  • 450 000 PLWRD in Finland
    • (8 % of the population)
    • The Finnish Disease Heritage
  • 30 millions PLWRD in Europe
  • 300 millions PLWRD worldwide
      • 3.5% – 5.9% of the worldwide population

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www.harvinaiset.fi

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Why?

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  • Lack of medical expertise and knowledge
  • Diagnostic delay – misdiagnosis
  • Limited research
  • Rare diseases also impact families, friends, care takers and society as a whole

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www.harvinaiset.fi

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www.harvinaiset.fi

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Involvement/ empowerment

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  • Empowerment on individual patient level
    • personal skills and knowledge
  • Empowerment on community level
    • mutual support groups
    • information sharing
    • coalition building
  • Empowerment on policy level
    • improve the shaping, prioritization and implementation of policies targeted PLWRD

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www.harvinaiset.fi

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www.harvinaiset.fi

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How to involve PLWRD?

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www.harvinaiset.fi

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Identifying, prioritising

Designing, managing

Funding, commissioning

Undertaking, analysing

Disseminating

Implementing

Evaluating impact

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�The Role of Patient Organizations�

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  • Gathering information and expertise to use in planning and evaluation
  • Offering counselling services, help-lines, support services
  • Helping PLWRD in process of empowerment
    • Peer-to-peer –support
  • Raising public awareness
  • Advocating, improving patient engagement

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www.harvinaiset.fi

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The Finnish Network for Rare Diseases

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  • 19 national umbrella organizations, founded 1995
    • ~ 100 diagnosis-based associations
  • Represents the interests of all PLWRD
  • Funded by Funding Centre for Social Welfare and Health Organisations (STEA)

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  • Organizes the annual Rare Diseases Day –campaign in Finland

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www.harvinaiset.fi

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UN Resolution �16 December 2021

“Addressing the Challenges of Persons Living with a Rare Disease and their Families.”

    • The outcome of coordinated and robust advocacy from rare disease civil society groups worldwide led by Rare Diseases International (RDI), the NGO Committee for Rare Diseases, and EURORDIS – Rare Diseases Europe.

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The resolution affirms that addressing the needs of Persons Living with a Rare Disease is essential to advancing the 2030 Agenda for Sustainable Development, which includes access to education and decent work, reducing poverty, tackling gender inequality, and supporting the inclusion of Persons Living with a Rare Disease in society.

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www.harvinaiset.fi

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www.harvinaiset.fi

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Vision : All persons living with a rare disease can live longer and better lives reaching full potential and well-being, included in a society that leaves no one behind��Mission is to work across borders and diseases to improve the lives of all persons living with a rare disease

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www.harvinaiset.fi

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National programme for rare diseases 2019–2023

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  • Increasing knowledge and awareness and strenghtening expertise
  • Strengthening of patient involvement in rare diseases
  • Coordination of activities related to rare diseases
  • First programme/ report 2014-2017

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www.harvinaiset.fi

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Results

  • Definition of Rare Diseases
  • Research funding and research programme
  • Rare Disease Units
  • National coordination
  • ERN memberships

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www.harvinaiset.fi

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European Reference Networks

  • virtual networks involving healthcare providers across Europe
  • aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources
  • 24 ERNs working on a range of thematic issues
  • Launched in March 2017

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www.harvinaiset.fi

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�HARVINAISET-VERKOSTO�Harvinaissairaan kokonaisvaltaisen arjen asiantuntijuutta�

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www.harvinaiset.fi

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Carita Åkerblom

carita.akerblom@harvinaiset.fi

+358 44 563 0083