Strategic Objectives and 3 Year Action Plan
When it comes to rare diseases it is often hard to get accurate assessments and the exact treatment necessary for them. With some, a misdiagnosis can run the risk of the patient being put through a lengthy and costly process that can ultimately leave them outside the nations’ health coverage. This leads to the care-givers and their patients without the support they need.
3.5 -
3.9%
RARE DISEASES
AFFECT GLOBAL POPULATION
40%
MISDIAGNOSED AT LEAST ONCE
80%
GENETICS ORIGIN
200M
ASIA PACIFIC
LIVING WITH 1 OF 7,000 KNOWN RARE DISEASES
The Asia Pacific Alliance of Rare Disease Organisations (APARDO), a collection of organizations formed in 2015, seek to provide this support by promoting the regional and national groups with the best practices and have the information required to ensure patients receive the appropriate care. APARDO aims to be a platform that supports national rare disease organisations and advocate for better resources and policies for patients and care-givers. To address these issues, APARDO aims to implement a 3-year action plan,
APARDO’s Strategic Objectives
To identify the gaps between patients’ unmet needs and existing healthcare policy on rare diseases in specific countries /jurisdictions in the region, with the aim of influencing the policies in these countries.
To promote tri-partite (Government, Non-Government Organisations and business sector/industry) collaborations for addressing rare disease issues and initiate the development of country-specific national rare disease action plans across the region.
To mobilize, empower and build up a network of rare disease patient leaders in the region.
Focus Areas
In alignment with the recommendations proposed in the Rare Disease Action Plan by the Asia Pacific Economic Cooperation (APEC), as well as member expectations, APARDO’s 3 Year Action Plan will be focusing on the following key areas.
3-Year Action Plan
To strive towards the strategic objectives set out, APARDO initiates its 3 Year Action Plan within the following context:
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Development level of rare disease patient organisations in the region is highly diverse. There is no one-size-fits-all plan or framework for APARDO member organisations. This diversity is considered within our planning and strategy.
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As an umbrella organisation of NGOs in the region, APARDO commits to supporting positive changes in national rare disease policies by empowering and informing national organisations. In its endeavour to promoting improved health outcomes and quality of life, it aims to strengthen its member organisations with opportunities for connection and learning. Further, as a regional platform for rare disease patient organisations, APARDO aims to partner the more developed member organisations to mentor and support developing member organisations.