Focus on Thalassemia: Screening, Diagnosis, and Treatment – Join Us for Multiple Events!

Focus on Thalassemia: Screening, Diagnosis, and Treatment – Join Us for Multiple Events!

The 31st International Thalassemia Day 

On May 8, 2023, we commemorate the 31st International Thalassemia Day, under the theme "Focus on Thalassemia: Equal Emphasis on Screening, Diagnosis, and Treatment." This theme calls for a scientific approach to the prevention and control of thalassemia, urging newlywed couples and those planning to conceive to prioritize thalassemia screening, prenatal diagnosis, and genetic counseling. It also emphasizes the importance of early diagnosis, timely treatment, and standardized health management for individuals living with thalassemia.

To increase public awareness and understanding of thalassemia, and to enhance prevention and control efforts, the Beijing Jingyan Foundation will soon collaborate with several hospitals and nonprofit organizations to hold a series of events in Fujian, Hunan, Guizhou, Shenzhen, Guangxi, and other regions. These events will include free medical consultations and screenings for thalassemia patients, health education, and engaging patient exchange activities to raise awareness and strengthen public ability to prevent and manage diseases.

We warmly invite youth of reproductive age, newlyweds, couples planning to conceive, as well as thalassemia patients and their families to join us at these events!

Fujian 

Activity Time: 5:00 PM, May 8
Activity Location: Online Live Stream
Activity Details: The event will feature Dr. LU Jingyuan, Associate Chief Physician of the Hematology Department at the Zhongshan Hospital, affiliated with Xiamen University. Dr. LU will conduct a live educational session for the public, covering topics such as thalassemia diagnosis and treatment, followed by a Q&A session with patients and their families.
Live Stream Registration Link: 

Hunan 

Activity Time: May 8
Activity Location: Hunan Children's Hospital
Activity Details:
The Beijing Jingyan Foundation, in partnership with Hunan Children's Hospital, will host a thalassemia health education seminar and a blood donation drive. Doctors will provide free consultations, and staff and volunteers will distribute informative materials, including thalassemia prevention brochures and charitable aid handbooks, to help attendees deepen their understanding of thalassemia.
Additionally, several thalassemia patients and their families have been invited to join the "Love in Action" craft session, where they will paint thalassemia-themed eco-friendly bags and create handmade bookmarks focusing on thalassemia prevention. The event will also feature the “Love Share” prize-based check-in activity, where participants can take photos with the thalassemia awareness display, promote thalassemia prevention policies and knowledge, and receive a small gift as a token of appreciation.

Guizhou 

Activity Time: May 8, Morning
Activity Location: Guiyang Maternal and Child Health Care Hospital
Activity Details:
The Beijing Jingyan Foundation has partnered with Guiyang Maternal and Child Health Care Hospital’s Prenatal Diagnosis Center, Pediatric Hematology and Oncology Department, and Reproductive Center to offer a joint free medical consultation. A patient meet-and-greet will be held, where individuals who have successfully undergone surgery will share their experiences and provide support to those preparing for surgery, helping to boost their confidence. The event will also feature a creative activity, where children and their families can paint on a custom canvas, leaving heartfelt wishes and messages of hope.

Guangdong 

Activity Date: May 11
Activity Location: Shenzhen Children’s Hospital

Activity Details:
The event will feature doctors from the Hematology and Oncology Department of Shenzhen Children’s Hospital, who will offer free medical consultations and answer questions on-site. Patients and their families will also be invited to share their experiences with hematopoietic stem cell transplantation. Additionally, the event will provide free matching and free thalassemia genetic testing.

Guangxi 

Activity Date: May 12, Afternoon
Activity Location: 4th Floor, Jinwangjiao International Hotel, Nanning

Activity Details:
The event will feature expert lectures by Professor YIN Xiaolin and other specialists from the 923rd Hospital of the Joint Logistics Support Force of the People's Liberation Army, covering topics such as thalassemia transplantation, gene therapy, and post-surgery care. Doctors from the Hematology and Endocrinology Departments of the 923rd Hospital will also be on-site to offer free medical consultations.

Together Towards a "Zero Thalassemia" Future

In 2018, the Beijing Jingyan Foundation officially launched the Building Love for Thalassemia Action project to assist children with thalassemia, providing continuous medical aid to help them overcome financial barriers and access healthcare resources. The Foundation has also actively engaged in raising awareness about thalassemia prevention, empowering primary healthcare systems, and supporting governments in high-prevalence areas to implement thalassemia prevention and control measures, aiming to prevent and manage serious childhood diseases from their source.

With years of experience in the thalassemia field, the Building Love for Thalassemia Action project reflects the Beijing Jingyan Foundation's pragmatic and low-key work approach. Operating with scientific, transparent, professional, and innovative methods, the project is widely recognized by families of children with thalassemia for its simplified application process and fast approval. Additionally, the initiative integrates medical and social resources to support children and their families during treatment and recovery, offering surgical kits, emotional support packages, and educational aid to help families navigate the challenges posed by the disease.

As of April 2024, the Building Love for Thalassemia Action project has assisted 969 children with severe thalassemia in undergoing hematopoietic stem cell transplants or intensive post-surgery anti-rejection treatments, with a total investment exceeding 43.98 million yuan. The Foundation has also organized over 100 thalassemia awareness events and live streams, training more than 1,200 grassroots doctors in specialties such as pediatrics, hematology, obstetrics, healthcare, and laboratory medicine in regions like Yunnan and Guizhou.

The long-term goal of the Building Love for Thalassemia Action project remains to prevent and ultimately eliminate thalassemia. In 2022, the Beijing Jingyan Foundation introduced the Zero Thalassemia Plan, which focuses on two key objectives: expanding treatment for existing patients and collaborating with various stakeholders to establish long-term prevention and control systems that aim to prevent the birth of children with severe thalassemia.

Looking ahead, the Building Love for Thalassemia Action project will continue to push forward the Zero Thalassemia Plan, leveraging increased public attention and social collaboration to enhance its rescue efforts and promote root cause governance, as we work together toward a future free of thalassemia.