17 institutions form "Guardian Alliance" for rare disease groups

On February 28, the International Rare Disease Day, Sina Micro Public Welfare Platform, China Red Cross Foundation, Seven-Color Viola Rare Disease Alliance, Corde Rare Disease Care Center, Mead Johnson China, Mead Johnson Public Welfare Foundation, Jingdong Health and other 17 institutions and organizations across the country, together with public welfare guardians Zhang Xinzhe and Cao Xiyue, jointly established the "Guardian Alliance" to launch the "Rare Life Force, Guard Them to Adventure" public welfare advocacy, so that more people recognize, care for and support rare disease groups.

The public welfare video recorded by the "Guardian Alliance" members of the Seven-Color Viola Children's Choir specially invited a number of children with rare diseases to sing the praises of life with moving voices, showing the resilience of life.

On the same day, the "Guardian Alliance" composed of 17 institutions gathered to speak out, and launched the #Guardian Them To Adventure #Weibo topic interaction on weibo, which has been read more than 55 million times and the interactive discussion volume 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.

For some people, adventure is a blessing in disguise, while for children with rare diseases they are born with many adventures.

As the initiator of the "Rare Life Force, Guard Them to Adventure" public welfare initiative and a member of the "Guardian Alliance", Mead Johnson expressed the hope that by joining hands with a group of institutions, non-profit organizations, caring enterprises, media, KOLs and public stars that pay attention to rare disease groups, they will gather into a stronger social force, jointly call for the participation of the broad public and become the guardians of the children's life journey, and create a more mutually helpful and inclusive social environment for this group of children and families, so that love is not rare.

It is reported that this public welfare advocacy starts from the three dimensions of highlighting the tenacity of children with rare diseases against pain, popularizing rare disease knowledge and establishing 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. (End)

Source: China News Network