AliHealth Launches Rare Disease Care Platform with Multiple Partners to Provide Diverse Philanthropic Services for Children with 17 Types of Genetic Metabolic Rare Diseases

AliHealth Launches Rare Disease Care Platform with Multiple Partners to Provide Diverse Philanthropic Services for Children with 17 Types of Genetic Metabolic Rare DiseasesTo better assist children with rare diseases, AliHealth, Alibaba Public Welfare, and the Pain and Challenge Foundation have jointly launched a rare disease care platform. The platform will collaborate with authoritative medical institutions, experts, and specialty medical milk powder producers to provide philanthropic services for children with 17 types of genetic metabolic rare diseases

AliHealth Launches Rare Disease Care Platform with Multiple Partners to Provide Diverse Philanthropic Services for Children with 17 Types of Genetic Metabolic Rare Diseases

To better assist children with rare diseases, AliHealth, Alibaba Public Welfare, and the Pain and Challenge Foundation have jointly launched a rare disease care platform. The platform will collaborate with authoritative medical institutions, experts, and specialty medical milk powder producers to provide philanthropic services for children with 17 types of genetic metabolic rare diseases. These services encompass medical service assistance, financial aid, specialty medical milk powder supply, and dietary management.

According to the International Rare Diseases Organization, there are approximately 7,000 to 10,000 rare diseases worldwide. These diseases are dubbed "medical orphans," affecting an estimated 300 million people. Beyond the challenges of diagnosis and treatment, patients with rare diseases often face difficulties in accessing necessary specialty medical foods.

Methylmalonic acidemia, for instance, is a rare autosomal recessive genetic disorder. Due to deficiencies in certain key enzymes and cofactors, patients are unable to properly metabolize specific amino acids found in food. This leads to an abnormal buildup of acidic substances in the body, resulting in metabolic acidosis. In severe cases, this can be life-threatening. For such patients, consuming even small amounts of meat or dairy products can trigger a "poisoning" effect. Specialty medical milk powder, devoid of the amino acids patients cannot metabolize, becomes crucial for their survival.

Currently, families in China mainly rely on cross-border e-commerce to purchase specialty medical milk powder, often facing risks of stock shortages. To address the widespread challenges of "difficulty in purchasing and high cost" faced by "Lemon Babies" (children with methylmalonic acidemia and propionic acidemia), Alibaba Public Welfare, AliHealth Public Welfare, and the Pain and Challenge Foundation jointly launched the "Lemon Baby Care Campaign." This initiative involves collecting information about patients' specialty medical milk powder needs and coordinating production with milk powder companies. AliHealth's large pharmacy leverages its cross-border platform capabilities to facilitate global sourcing, production communication, price negotiations, international logistics, customs clearance, warehousing, and distribution, providing official, genuine, and affordable specialty medical milk powder to Chinese "Lemon Babies." Meanwhile, Cainiao utilizes its professional logistics expertise to ensure the smooth delivery of specialty medical milk powder. To date, the campaign has successfully supplied nearly ten thousand cans of specialty medical milk powder to affected children.

The newly launched rare disease care platform represents an upgrade to the "Lemon Baby Care Campaign," primarily in two respects:

First, the number of supported rare diseases has expanded from two to 17. In addition to "Lemon Babies," the platform will offer philanthropic services to children with 15 other types of genetic metabolic rare diseases, broadening its scope and assisting a larger number of patients.

Second, the platform provides more diverse philanthropic services for children. Beyond ensuring specialty medical milk powder supply, the platform will also offer medical service assistance, financial aid, and dietary management, helping families address a wider range of practical concerns.

Users can access the relevant information by visiting the AliHealth large pharmacy through Taobao, clicking on the "My" button, and entering the "Rare Diseases Zone." The project will collaborate with top medical institutions and neonatal screening centers in multiple provinces to provide medical assistance, specialty milk powder supply, and other support to diagnosed children.

Early detection, diagnosis, and intervention are crucial for the prognosis of these children. Beginning treatment during the breastfeeding period can effectively reduce acidosis and prevent intellectual impairment. Therefore, besides providing philanthropic assistance to children under 18, the project will focus on covering the cost of specialty medical milk powder for newly screened positive infants aged 0-1, offering more proactive and timely supply guarantees and more substantial financial aid. The aim is to help parents acquire the necessary skills for scientific management and navigate this initial challenge.

Furthermore, the "Lemon Baby" dietary calculator is now available. By simply inputting basic information such as age and weight, parents can precisely calculate their child's protein intake and relevant precautions. This tool alleviates the burden of daily care and prevents protein overload leading to acidosis.

The launch of this project marks a significant step forward for AliHealth in the field of rare disease care. Going forward, AliHealth will continue to work alongside various partners to provide high-quality and convenient services for children with rare diseases, helping them build a brighter future.

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