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Global Rare Disease
Policy Network

An evolution of the Asia-Pacific Economic Cooperation (APEC)

Rare Disease Network & the global steward of the 

APEC Action Plan on Rare Diseases

Enabling a future where every country in the world has effective, patient-centered, and evidence-informed rare disease policy

Accelerate & harmonize
rare disease policy

Our mission is to accelerate & harmonize the design, adoption, and implementation of national rare disease policies & plans, with a focus on Asia Pacific & Latin America, by catalyzing political will & sustaining momentum, and facilitating exchange of best practices between & within countries.

Rare Toolbox

Create tools to help governments & partners make political & policy decisions for rare diseases

Rare in All Fora

Elevate rare disease on health & political agendas and foster cooperation through multilateral fora

Rare in Progress

Measure, benchmark & communicate progress of rare disease policy design, adoption & implementation

Rare Partners

Connect policymakers with diverse experts from civil society, academia, industry & other governments 

Patient Centered.
Evidence Informed.
Health Minister Endorsed.

APEC Action Plan on Rare Diseases

In 2017, Health Ministers from the 21 economies of the Asia-Pacific Economic Cooperation (APEC) Forum established the APEC Rare Disease Network. This group of government policymakers, academic & clinical experts, patients & advocates, and industry leaders developed the APEC Action Plan on Rare Diseases, which all 21 APEC Health Ministers approved and endorsed in 2018. 

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The APEC Action Plan on Rare Diseases contains more than 70 recommendations & 30 targets with measurable indicators across 10 pillars. It is informed by peer-reviewed evidence, best practices & real-world learnings from diverse stakeholders around the world. It is translated into Spanish, Chinese (Traditional), Portuguese, Japanese, and Thai. Over the past 5 years, governments have used the Action Plan to spark national planning efforts & guide policy change.  

We Take Pride in Our Network

"World's largest public-private partnership focused on rare disease policy"

- Economist Impact, 2021

Governments

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COMUNIDAD ANDINA

60+

departments, agencies & other entities

Academia & Clinical Experts

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80+

universities, hospitals & research institutes

22

Countries

400+

Total

Members

200+

Government

Officials

140+

Academic & Clinical Experts

60+

Patient Advocates & PLWRD

Ready to Join Our Network?

Government official responsible for rare disease policy?

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Clinical or academic expert in rare diseases?

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Head of a national rare disease patient advocacy group?

 

Industry leader driving therapeutic or diagnostic innovation & access for rare diseases?

People Living with a Rare Disease

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15+

national rare disease PAG federations

Industry Leaders

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10+

national associations & business chambers

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