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World Rare Disease Day | Light up the “little blue flower” to help children with rare diseases

World Rare Disease Day | Light up the “little blue flower” to help children with rare diseases


On February 28, 2023, which coincides with the 16th “International Rare Disease Day”, China Pacific Insurance’s Pacific Health Insurance, Shanghai Soong Ching Ling Foundation, and Shanghai Children’s Medical Center affiliated to Shanghai Jiaotong University School of Medicine jointly organized “Send You a Rare Disease Day”. “Little Blue Flower” public welfare science popularization activity invited rare disease medical experts from Shanghai Children’s Medical Center Affiliated to Shanghai Jiaotong University School of Medicine to the live broadcast room to conduct online rare disease knowledge popularization and Q&A live broadcast, which was warmly welcomed by patients and the general public .

In recent years, words such as “baby panda”, “baby porcelain”, and “baby butterfly” have been frequently searched. These names seem beautiful, but behind them correspond to a special identity-children with rare diseases. In November 2022, Pacific Health Insurance and the Shanghai Soong Ching Ling Foundation launched a public welfare strategic cooperation on the banks of the Huangpu River, and jointly released the “Little Blue Flower” children’s rare disease care public welfare project, calling on more people to pay attention to children with rare diseases. The project focuses on children with rare diseases, and creates a “four-in-one” rare disease care model of cognition, treatment, rehabilitation, and research. Help for Rare Disease Children and Families. The International Rare Disease Day “Send You A Little Blue Flower” public welfare activity is the first step after the establishment of the project.

  The 16th International Rare Disease Day, send you a “little blue flower”

At present, there are about 7,000 rare diseases in the world, 80% of which are caused by genetic defects. Studies have found that more than 50% of rare diseases can occur at birth or in childhood, so childhood is the most important stage for discovering and diagnosing rare diseases.

In recent years, with the improvement of the national medical system and the improvement of medical technology, it is no longer difficult to see a doctor. However, for children with rare diseases, difficult diagnosis, difficult treatment, and difficult medication are still the “three mountains” that plague them and their families. Statistics show that there are nearly 20 million patients with rare diseases in my country, with more than 200,000 new patients each year. Most of them cannot receive adequate and effective medical treatment, or even recognize that they have a rare disease. Therefore, it is imminent to promote the science popularization of rare diseases.

In the live popularization session, three experts from Shanghai Children’s Medical Center Affiliated to Shanghai Jiao Tong University School of Medicine, Li Xin, Wang Yirou, and Zhang Qianwen, introduced three rare diseases, namely Noonan syndrome, Kabuki syndrome, and Alstrom syndrome, to explain in simple terms , A relaxed and witty way, the causes, symptoms and treatment options of popular science diseases, “rare” for love, let more people see rare diseases.

In the free clinic session, Dr. Yu Tingting and Dr. Yao Ruen, both from Shanghai Children’s Medical Center affiliated to Shanghai Jiaotong University School of Medicine, patiently answered questions from the audience and interacted with the audience in the live broadcast room to help the public further understand and accept rare diseases, and pass on human care to every audience participating in the event.

  Focusing on the Four in One of Rare Diseases, Exploring a New Model of Internet Public Welfare

In order to mobilize the public to better participate in public welfare, the “Little Blue Flower” love rights and interests have been officially launched on the eve of the International Rare Disease Day on February 28 in the Pacific Health Insurance “Blue Medical Insurance” applet. Mini-program users can participate in the blue medical insurance health sub-interaction and light up the exclusive public welfare little blue flower. Pacific Health Insurance will initiate a donation to the Shanghai Soong Ching Ling Foundation with a corresponding amount for users who light up the love rights and interests, and provide targeted support for children with rare diseases to care for public welfare.

In the future, the “Little Blue Flower” Children’s Rare Disease Care Project will continue to focus on the four dimensions of recognition, treatment, rehabilitation, and research of children’s rare diseases. solutions to social integration issues.

Shang Jiaoyan, Secretary of the General Party Branch of Pacific Health Insurance, said that applying this brand-new model of network linkage assistance to the promotion of public welfare projects is an innovative attempt of “Little Blue Flower” public welfare, and the purpose is to let more people have the opportunity to learn about rare diseases in children , and also call on more people to join the national health public welfare undertakings; Pacific Health Insurance will also give full play to the advantages of insurance companies, and continue to help the project through public welfare donations, voluntary services, product development, and medical and health resource support.

  Public welfare + commercial linkage, practicing the original intention of “insurance for good”

As a caring and responsible insurance company, Pacific Health Insurance has been adhering to the original intention of the insurance industry to be good since its establishment in 2014, and has continued to practice corporate social responsibility.

In terms of inclusive insurance, Pacific Health Insurance has launched a series of blue medical insurance long-term medical insurance products. On the basis of in-depth insight into the needs of target customer groups, it has expanded the drug coverage catalog and facilitated the construction of a multi-level medical security system. It is committed to serving young Chinese users and their families. The family provides long-term, comprehensive and caring health protection.

In terms of non-standard innovation, Pacific Health Insurance developed the “Pink Companion” and “Pink Guardian” series of special insurance for breast cancer patients to help Chinese women’s breast health; Insurance products, through continuous iterative upgrades, expand the coverage of insurance protection liabilities, and are committed to solving the difficult problem in the insurance industry of “protecting healthy people, or insuring people’s health”.

The “Little Blue Flower” public welfare project is linked with “Blue Medical Insurance”, which implants the original intention of insurance into the Internet gene. It is also a brave attempt by Pacific Health Insurance to organically combine public welfare and business. , to strengthen brand communication capabilities through warm public welfare stories, so that more people can “benefit” to move forward; Sustainable vitality and influence.



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