SEATPA Introduction

Thalassaemia is among the most common monogenic disorders worldwide and Southeast Asia is at the epicenter. Every year, thousands of children are born with severe forms of the disease, requiring lifelong treatment and placing immense strain on families and health systems.

SEATPA brings together governments, experts, and partners across the region to prevent transmission, improve diagnosis and care, and share solutions for a healthier future.

Background
Severe thalassaemia requires lifelong transfusions and iron chelation; without treatment, most affected children die in early childhood. Uneven diagnostics and the inherited nature of the disease perpetuate a cycle of medical and socioeconomic hardship—underscoring the need for a coordinated regional alliance and genomic approaches aligned with initiatives such as HGP2.
Challenges
01
High prevalence & impact
Southeast Asia bears a disproportionate burden, with prevalence exceeding 150 per 100,000 in some countries and large case numbers concentrated in the region. 
02
Unequal access
While diagnostics and curative options (e.g., HSCT) exist, accessibility remains uneven due to costs, donor limitations, and infrastructural constraints.
03
Intergenerational cycle
As a genetic condition, thalassaemia persists across generations without widespread carrier screening and counselling.
04
Economic burden
Lifelong transfusions and chelation impose heavy costs on families and strain national health budgets, diverting resources from other priorities.
05
Data gaps
The absence of a comprehensive regional genotype/epidemiology database limits policymaking, progress tracking, and resource allocation.
Mission & Goals
  • VisionA future where Southeast Asia eliminates preventable thalassaemia through shared knowledge, innovation, and coordinated action.
  • MissionTo strengthen thalassaemia prevention in Southeast Asia by uniting countries, experts, and communities in a common effort.
Strategic Goals
Regional Platform
Create a collaborative network where clinicians, researchers, and policymakers can share knowledge and solutions across borders.
Capacity Building
Exchange tools and expertise so that genetic testing, diagnosis, and treatment are accessible in every country.
Shared Knowledge
Promote the exchange of regional expertise and best practices to monitor progress and inform policy development.
Integrated Prevention
Embed screening and treatment into national health systems, ensuring they are part of long-term care strategies.
Awareness & Support
Raise public understanding, reduce stigma, and encourage early screening as a widely accepted norm.
Working Groups
To achieve its mission, SEATPA organizes its work into specialized groups:

Hematology and Clinical Expert Group

Focus on improving diagnosis, treatment standards, and patient care.


Genetics and Genomics Group

Develop and share cost-effective screening and genetic testing tools.


Public Health Group

Promote prevention programs, policy integration, and awareness campaigns.


Standards and Quality Control Group

Establish regional guidelines, ensure accuracy, and harmonize practices.


AI & Information Technology Group

Build shared data platforms, apply AI to screening and prediction, and strengthen cross-border data collaboration.


Industrial Partner Coalition

Provide technical and logistical support and in-kind resources to scale screening and services.


Funding Coalition

SEATPA is supported by a coalition of partners: multilateral and bilateral collaborations, industry contributions, research funds, and NGOs, working together for long-term sustainability.

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