"Guardian Alliance" cares for "Moon Child", "Butterfly Baby"

Courtesy of the interviewee

Xinmin Evening News (reporter Zhang Yuyun) was born rare, but not alone. February 28 this year is the 14th International Rare Disease Day, Mead Johnson, Mead Johnson Charity Foundation, Sina Micro Charity Platform, and China Red Cross Foundation, Seven-Color Viola Rare Disease Alliance, Corde Rare Disease Care Center, Jingdong Health and other 17 institutions composed of the "Guardian Alliance" gathered to speak out, launched the #Guardian Them to Adventure #Weibo topic interaction on weibo, which attracted widespread public attention. As of now, the number of reads has exceeded 53 million, and the number of interactive discussions has exceeded 25,000.

Rare diseases are those with a prevalence of less than 1 in 500,000, or a neonatal incidence of less than 1 in 10,000, and they are one of the biggest challenges facing human medicine. At present, there are about 7,000 known rare diseases worldwide, but less than 10% of rare diseases have approved treatment drugs or regimens. The latest data show that there are currently more than 300 million people with rare diseases worldwide, of which nearly 50% are children. In China, the size of the rare disease population is about 20 million. Children who do not eat fireworks in the world, frozen people, children of the moon, butterfly babies... These seemingly cute aliases experience the pain of life that ordinary people cannot imagine behind them.

As the initiator of the "Rare Life Force, Guard Them to Adventure" public welfare initiative and a member of the "Guardian Alliance", Mead Johnson hopes to join hands with a group of institutions, non-profit organizations, caring enterprises, media, KOLs and public stars that pay attention to rare disease groups, and jointly call for the participation of the broad public and become the guardians of the children's life journey, creating a more mutually helpful and inclusive social environment for this group of children and families.

It is reported that this public welfare advocacy starts from the three dimensions of highlighting the resilience of children with rare diseases to fight against illness, the popularization of rare disease knowledge, and the establishment of a rare disease social care and support network, through the public welfare video of the rare disease children's choir, the hand-drawn long map of rare disease science, the public welfare crowdfunding and other ways, combined with the expertise of the members of the "Guardian Alliance" in their respective fields, to leverage a wider range of public awareness and participation.

In addition, Mead Johnson China and JD Health jointly launched the "Rare Life Force" rare disease knowledge page, which popularizes rare disease knowledge to nearly 80 million annual active users of JD Health. The "Rare Disease Care Center" of Jingdong Pharmacy has also been officially launched, creating a one-stop solution platform for "medicine, medicine, insurance and public welfare" to help alleviate the three major problems of rare disease groups with comprehensive rare disease drugs and medical services, such as the difficulty of diagnosis and medical treatment, the difficulty of drug accessibility, and the difficulty of drug payment.