starbuds program initiated to provide life-cycle care for children with rare diseases
under the guidance of the expert group from shanghai scientific association of better birth & better upbringing (shanghai maternal and child health association), shanghai foundation for rare disease, and shanghai high-level local universities key innovation team (child health maintenance and promotion), and under the co-sponsorship by shanghai fosun foundation and children’s hospital of fudan university, the “starbuds care project for children with rare diseases” has launched at the 3rd fosun csr night at the shanghai symphony orchestra concert hall on december 23, 2020. at the meantime, it marked the beginning of a series of projects dedicated to providing life-cycle care for more children with rare diseases and raising awareness among public for children with rare diseases. the project aroused the strong support by fosun pharma, fosun healthcare, starkids children’s hospital (new hong qiao campus for children’s hospital of fudan university), fosun health plus, guarding kids in hubei platform, and other entities and platforms.
the launch of the starbuds care project for children with rare diseases foundation marks the beginning of “starbuds” activities toward caring children with rare diseases. it is an awareness raising attempt that took place at the 3rd fosun csr night at the shanghai symphony orchestra concert hall on december 23, 2020, under the guidance of the expert group from shanghai scientific association of better birth & better upbringing (shanghai maternal and child health association), shanghai foundation for rare disease, and shanghai high-level local universities key innovation team (child health maintenance and promotion), and under the co-sponsorship by shanghai fosun foundation and children’s hospital of fudan university. the program is dedicated to providing life-cycle care for more children with rare diseases. this event was undertaken by fosun pharma and backed up by fosun healthcare, starkids children’s hospital (new hong qiao campus for children’s hospital of fudan university), fosun health plus, guarding kids in hubei platform, and other entities and platforms.
xie lijuan, founder and consultant of shanghai foundation for rare disease, gui yonghao, former managing vice president of fudan university and former president of fudan university shanghai medical college, li shanguo, president of shanghai scientific association of better birth & better upbringing (shanghai maternal and child health association), li dingguo, president of shanghai foundation for rare disease, xu hong, party secretary of children’s hospital of fudan university, li haifeng, president of shanghai fosun foundation, and chen yuqing, co-president of fosun pharma and chairman of fosun healthcare have attended the launch ceremony.
rare diseases are typically chronic, severe and often life-threatening disorders with low incidence and prevalence. according to the food and drug administration (fda), there are more than 7,000 known rare diseases affecting an estimated 350 million people worldwide. the data from the national institutes of health shows that many rare diseases appear early in life, and 50% of the sufferers are children, with as many as 30% dying before reaching their fifth birthday. globally most common rare diseases for kids include albinism, osteogenesis imperfecta, mucopolysaccharidosis, and growth hormone deficiency. the 2019 report on accessibility of rare diseases drugs in china shows that there are annually more than 200 thousand new births with rare diseases in china.
xu hong, party secretary of the children’s hospital of fudan university, said in her speech that "the children’s hospital of fudan university has been dedicated to promoting children’s healthy growth. at present, the rare diseases for children in china are challenged by insufficient public awareness, high prices of drugs, and lack of funding for scientific research. the “starbuds care foundation for children with rare diseases”will focus on promoting knowledge of rare diseases, funding children with rare diseases, building a union and database of rare diseases, and supporting research projects on rare diseases. in dosing so, we intend to promote the idea of providing life-cycle care for children with rare diseases, bring rare diseases to public attention, help and treat more children patients, and make diagnosis and treatment of rare diseases more standardized and systematic. as such, these special buds can live and grow under the same starry sky.”
li haifeng, president of shanghai fosun foundation, said that “children and teenagers are important groups to whom shanghai fosun foundation shows concern and care. the pramerica fosun spirit of community awards, launched by shanghai fosun foundation, have involved millions of outstanding young volunteers from 12 to 18 years of age around the world who have helped others, served the community, contributed to society, and achieved their value through voluntary services. children are the country’s future. i sincerely hope that the “starbuds care project for children with rare diseases” program will solve more pain points for children with rare diseases and allow them to grow up as healthy as ordinary children.”
wu yifang, chairman and ceo of fosun pharma, said: “it requires concerted efforts from our society to improve the accessibility of treatment for patients with rare diseases. fosun pharma has more than 10 products under clinical development for rare diseases in the areas of oncology, ophthalmology, respiratory and hematology through independent research and development and licensing. it is actively working to improve the accessibility of innovative drugs among patients with rare diseases. fosun pharma regards innovation as the most important social responsibility of pharmaceutical companies. hopefully the “starbuds” foundation will bring love to more children patients and allow more families to enjoy health.”