Jingyan News | Beijing Jingyan Foundation Signs Agreement with Luodian, Guizhou, Adding a New Pilot Site to the Zero Thalassemia Plan

On April 8, 2025, the implementation symposium for the Zero Thalassemia Plan in Luodian County, Qiannan Buyi and Miao Autonomous Prefecture, Guizhou Province, was officially held. Ms. SONG Yan, Chairperson of Beijing Jingyan Foundation, attended the event and signed an agreement on behalf of the Foundation with the Luodian County Civil Affairs Bureau, Luodian County Health Commission, and Luodian County Charity Federation, marking the official launch of the Zero Thalassemia Plan pilot in Guizhou.

Thalassemia is a hereditary blood disorder caused by mutations or deletions in the globin gene. It is recognized globally as a major congenital health concern. Patients with intermediate or severe forms require lifelong, regular, and timely treatment. Hematopoietic stem cell transplantation is currently the most effective curative treatment for severe thalassemia, yet it involves high medical requirements and costs. Thalassemia is characterized by being “difficult to treat but preventable.” Implementing a three-tier prevention strategy—including premarital, pre-pregnancy, and prenatal screening, diagnosis, and intervention—can effectively reduce the birth of children with severe thalassemia.

In 2018, Beijing Jingyan Foundation officially launched the Building Love for Thalassemia Action initiative, focusing on children with severe thalassemia. The project aims to promote Zero Thalassemia in China through a dual approach of direct assistance and prevention. To date, the initiative has reached all high-incidence regions for thalassemia across mainland China, supporting over 1,500 children in hematopoietic stem cell transplantation and post-operative care, with total funding exceeding 60 million yuan.

Building on years of experience, Beijing Jingyan Foundation officially launched the Zero Thalassemia Plan, adhering to a dual-track strategy of treatment and prevention. The program provides intensive support to existing severe thalassemia patients and collaborates extensively with local governments, hospitals, and other institutions to enhance the coverage of birth defect interventions, aiming to reduce the incidence of severe thalassemia in high-risk regions toward zero. In November 2023, Beijing Jingyan Foundation signed an agreement with Xishuangbanna Prefecture in Yunnan Province, officially launching the pilot phase of the Zero Thalassemia Plan.

Guizhou is one of China’s high-incidence regions for thalassemia. Epidemiological data show that the thalassemia gene carrier rate in the province is 8.68%, meaning that, on average, one in every ten people carries the thalassemia gene. Among Qiannan and Qianxinan Prefectures, which border Yunnan and Guangxi, the proportion of ethnic minority populations is high, and the thalassemia carrier rate is higher than in other areas.

With the joint support of Beijing Jingyan Foundation, the Guizhou Provincial Civil Affairs Department, and the Luodian County Government, the pilot phase of the Zero Thalassemia Plan was officially launched in Luodian. This marks the first pilot site of the program in Guizhou Province. Beijing Jingyan Foundation and the Guizhou Civil Affairs Department will use this as a starting point to gradually expand pilot work to other regions within the province.

Under the terms of the agreement, Beijing Jingyan Foundation will intensify efforts to treat existing severe thalassemia children in Luodian, regularly organizing free clinic and screening activities with nationally renowned hospitals and expert teams in the field of thalassemia. Luodian children who meet the assistance criteria of the Building Love for Thalassemia Action project will receive financial support, and families facing particularly severe economic difficulties will also be provided with living subsidies from Beijing Jingyan Foundation.

At the same time, Beijing Jingyan Foundation will collaborate with local government departments in Luodian to reduce the incidence of severe thalassemia. The Foundation will provide partial subsidies for thalassemia-related screening tests for eligible early-pregnancy couples, promoting greater coverage of screening in the county. In cooperation with the Luodian Civil Affairs Department and other agencies, the Foundation will develop a grassroots outreach team to conduct public education campaigns, distribute thalassemia educational materials at marriage registration offices, and enhance awareness among couples of childbearing age. Given the high proportion of ethnic minority populations in the county, the Foundation will also explore joint thalassemia education initiatives in minority communities.

Leveraging its expertise and resources in pediatric healthcare, Beijing Jingyan Foundation will coordinate domestic thalassemia treatment experts to hold training sessions in Luodian for local medical personnel, offering free professional development opportunities. In addition, the Foundation will help establish a remote consultation mechanism between leading hospitals and Luodian medical institutions to provide diagnostic guidance, thereby strengthening the county’s capacity to prevent and treat thalassemia.

At the signing ceremony, Ms. SONG Yan, Chairperson of Beijing Jingyan Foundation, stated that achieving “Zero Thalassemia” is not an overnight task and requires multi-dimensional collaboration led by the government, supported by society, and reinforced by technology. With a decade of experience in patient assistance, the Foundation is committed to building a comprehensive screening network, establishing a solid treatment chain, and cultivating a new generation of thalassemia prevention personnel in Luodian. Within three to five years, the Foundation aims to provide bone marrow transplants for all eligible severe patients, ending the intergenerational transmission of thalassemia in Luodian and helping the county achieve “Zero Thalassemia.”

Since 2019, Beijing Jingyan Foundation has been supporting severe thalassemia patients in Guizhou, and to date has assisted 202 Guizhou children with transplants and post-operative care. Ms. SONG Yan revealed that the Foundation will continue to expand treatment support for thalassemia children in Guizhou, and the Zero Thalassemia Plan will gradually be piloted in more regions nationwide, with the ultimate goal of eliminating thalassemia across the country.