alibaba launches "rare disease care platform" to provide comprehensive assistance to families of children with rare diseases
2024-09-13
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zhu yao, reporter of chao news client
ali health launches "rare disease care platform" to provide comprehensive assistance to families of children with rare diseases
on september 12, ali health and alibaba charity and the pain challenge foundation jointly launched a rare disease care platform, linking authoritative medical institutions and experts with special medical milk powder manufacturers and other forces to provide public welfare services for children with 17 rare genetic metabolic diseases, including medical service assistance, financial assistance, special medical milk powder supply, and dietary management.
ali health’s “rare disease care platform” was officially launched. image provided by the interviewee
according to statistics from the international federation of rare diseases, there are 7,000 to 10,000 rare diseases discovered worldwide, and the number of patients known as "medical orphans" is about 300 million. in addition to "difficult diagnosis and treatment", patients with rare diseases also face the difficulty of not being able to meet the demand for special medical food.
take methylmalonic acidemia as an example, it is a rare autosomal recessive genetic disease. due to defects in certain key enzymes and cofactors in the body, patients cannot metabolize certain amino acids in food normally, resulting in abnormal accumulation of acidic substances in the body and metabolic "acidosis", which can be life-threatening in severe cases. for them, eating one more bite of meat or drinking one more sip of milk in daily life may cause "poisoning". special medical milk powder, which removes the amino acid components that the sick children cannot metabolize, has become a necessity for them to maintain their lives. at present, domestic patient families mainly purchase special medical milk powder through "overseas shopping", and often face the risk of "out of stock".
worried about the risk of out-of-stock, the "lemon baby" has stockpiled milk powder at home. photo provided by the interviewee
in september 2023, in order to solve the problem of "difficult to buy and heavy burden" of special medical milk powder commonly faced by "lemon babies" (patients with methylmalonic acidemia and propionic acidemia), alibaba charity, ali health charity and the pain challenge foundation jointly launched the "lemon baby care action", which collects the number of patients' special medical milk powder demand and coordinates milk powder companies to arrange production. ali health pharmacy uses its cross-border platform capabilities to open up global sourcing, production capacity communication, price negotiation, international logistics, customs clearance, warehousing and distribution links to provide official authentic and affordable special medical milk powder for china's lemon babies. cainiao uses its professional logistics capabilities to provide logistics support for special medical milk powder. so far, nearly 10,000 cans of special medical milk powder have been supplied to children with the disease.
the rare disease care platform released this time is an upgrade of the "lemon baby care action". first, the number of rare disease support for children with children has been expanded from two to 17; second, more diversified public welfare services are provided for children with rare diseases. users can enter ali health pharmacy through taobao, click the "my" button, and enter the "rare disease zone".
the project will link top medical institutions and newborn screening centers in multiple provinces to provide medical assistance and special milk supply to confirmed children. since early detection, early diagnosis, and early intervention of newborns are of great significance to the prognosis of children, if treatment can be started in time from the breastfeeding period, it will effectively reduce acidosis and avoid intellectual impairment. therefore, in addition to providing public welfare assistance to children under the age of 18, the project focuses on providing more proactive and timely supply guarantees and greater financial assistance for the special medical milk powder expenses of newly screened positive children across the country during the period of 0-1 year old, hoping to help parents master the ability of scientific management as soon as possible and overcome the first difficulty.
in addition, the "lemon baby" diet calculator is now online. you only need to enter basic information such as age and weight to accurately calculate your child's protein intake and precautions, helping parents reduce the burden of daily care for their children and avoid "acidosis" due to excessive protein.
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