Focusing on Thalassemia: Balancing Screening, Diagnosis, and Treatment – Jingyan in Action

Focusing on Thalassemia: Balancing Screening, Diagnosis, and Treatment – Jingyan in Action

On May 8, 2024, we marked the 31st International Thalassemia Day, with the theme of focusing on thalassemia: equal emphasis on screening, diagnosis, and treatment. This theme advocates scientific prevention and control of thalassemia, urging newlywed couples and those planning to conceive to prioritize thalassemia screening, prenatal diagnosis, and genetic counseling, while promoting early diagnosis, treatment, and standardized health management for thalassemia patients.

To raise public awareness and understanding of thalassemia, enhance prevention and control efforts, and promote children's healthy growth, the Beijing Jingyan Foundation recently collaborated with multiple hospitals and charitable organizations to organize a series of events in Hunan, Guizhou, Fujian, Guangdong, and Guangxi, featuring a rich variety of activities in various formats.

Hunan

On May 8, 2024, the Beijing Jingyan Foundation, in collaboration with Hunan Children's Hospital and other organizations, officially held the Accompany with Love, Building Dreams to Eliminate Thalassemia public welfare event in Hunan Province, focusing on raising awareness and providing support for thalassemia.

The event featured a health education seminar on thalassemia, during which medical staff from Hunan Children’s Hospital provided free blood tests, including complete blood counts and ferritin levels, along with medical consultations for thalassemia patients. Staff and volunteers distributed informative materials such as thalassemia prevention brochures and charitable assistance guides to help attendees deepen their understanding of thalassemia.

Additionally, a large-scale blood donation drive took place, and several children and families previously supported by the Building Love for Thalassemia Action project were invited to join the event. They participated in the Action for Love craft activity, where they painted thalassemia-themed eco-friendly bags and created handmade bookmarks promoting thalassemia prevention.

To further engage attendees, the event featured a Spread Love prize-based check-in activity, enabling participants to share their newfound knowledge about thalassemia and welfare policies, while also spreading love and warmth in their own unique ways.

Guizhou

To support more children in overcoming thalassemia, the Beijing Jingyan Foundation, in collaboration with Guiyang Maternal and Child Health Care Hospital, hosted a public welfare event on the morning of May 8, themed "Focus on Thalassemia: Equal Emphasis on Screening, Diagnosis, and Treatment."

During the event, the Prenatal Diagnosis Center, Pediatric Hematology and Oncology Department, and Reproductive Center of Guiyang Maternal and Child Health Care Hospital provided joint free medical consultations. Doctors conducted thorough examinations and offered detailed explanations to thalassemia patients and their families. A patient-sharing session was also organized, where families of patients who had successfully undergone surgery shared their experiences with those preparing for treatment, fostering confidence and reassurance among prospective patients.

The event also featured a creative activity where children and their families painted on custom canvases and drawings, expressing their hopes and best wishes for recovery and a brighter future, symbolizing their determination to overcome the challenges posed by thalassemia.

Fujian

To raise awareness and deepen public understanding of thalassemia, the Beijing Jingyan Foundation invited Dr. LU Jingyuan, Associate Chief Physician of the Hematology Department at Xiamen University Zhongshan Hospital, to host a public health livestream on May 8 at 7 PM via the Jingyan Foundation's video channel. During the session, Dr. LU provided an informative overview of thalassemia diagnosis and treatment, while also engaging in meaningful discussions with patients and their families.

Guangdong

On May 11, the Beijing Jingyan Foundation, in collaboration with Shenzhen Children's Hospital and other compassionate organizations, hosted a special event titled "Path to the Sun: Renewed Life through Transplantation" in honor of International Thalassemia Day.

At the event, Dr. LIU Sixi, Director of the Hematology and Oncology Department at Shenzhen Children's Hospital, delivered an informative session on thalassemia, providing valuable insights into its diagnosis and treatment. Families of children who had successfully undergone hematopoietic stem cell transplantation were invited to share their personal journeys, offering inspiration and support to others currently navigating the challenges of thalassemia. Many parents in attendance expressed their renewed commitment to following standardized protocols for blood transfusion and iron chelation therapy.

The event also featured complimentary HLA matching and thalassemia genetic testing, alongside free consultations and Q&A sessions led by specialists from the hospital's Hematology and Oncology Department.

Guangxi

On May 12, the Beijing Jingyan Foundation, in collaboration with the 923rd Hospital of the Joint Logistics Support Force of the People's Liberation Army and other organizations, hosted a series of International Thalassemia Day events, including a patient education session. During the event, several experts delivered informative lectures on topics such as thalassemia transplantation, gene therapy, and post-operative care.

The event also welcomed children who had previously undergone treatment at the 923rd Hospital to achieve independence from blood transfusions. These children, who were beneficiaries of the Jingyan Foundation's thalassemia assistance project, attended the event with their families to express their gratitude. Together, they presented the Foundation with a banner as a token of their appreciation.

Six Years of Fighting Thalassemia: Jingyan Foundation’s Ongoing Commitment

Since its founding, the Beijing Jingyan Foundation has been dedicated to tackling major health issues, including thalassemia. In 2018, the Foundation officially launched the Building Love for Thalassemia Action project, an aid project aimed at supporting impoverished children suffering from thalassemia.

Through this initiative, the Foundation has consistently provided medical assistance to children in need, helping them overcome financial barriers and access vital medical care. It has also actively promoted thalassemia prevention, strengthened grassroots healthcare systems, and supported local governments in high-prevalence regions to advance thalassemia control efforts, all while working towards the goal of achieving a “Zero-Thalassemia China.”

Over the past six years, the Building Love for Thalassemia Action project has expanded its reach to several high-prevalence regions across China. In partnership with 20 hospitals in eight provinces—including Guangxi, Guangdong, Hainan, and Yunnan—the project has trained over 3,500 local healthcare professionals and organized nearly 150 events, including free medical consultations, screenings, physician training, and public education campaigns. To date, the initiative has supported 969 children with severe thalassemia, with total financial aid exceeding 43.98 million RMB.

With a focus on a comprehensive approach to screening, diagnosis, and treatment, the Beijing Jingyan Foundation continues to refine and expand the Building Love for Thalassemia Action project through its professional team, standardized management, and efficient operations. The Foundation remains committed to supporting children with severe thalassemia and assisting local governments in implementing comprehensive prevention and control strategies.

Moving forward, we are eager to partner with more compassionate organizations to help families affected by thalassemia. Together, we can bring the dream of a "Zero-Thalassemia World" closer to reality.