Rare disease patients not only suffer from lifelong birth defects, but also plunge their families into endless pain. Parents watch helplessly as their children struggle with the disease and step by step toward the end of their lives. Powerless, suffering from heartache and soul-rending torture. Recently, "a 1-year-old child spent 550,000 yuan on medical treatment in four days" became a hot search topic and caused controversy. "What kind of medicine was used? It's so expensive!" It is understood that the patient is a 1-year-old girl suffering from the rare disease Spinal Muscular Atrophy (SMA). The imported drug Nosinaxin Sodium Injection was used for her treatment. Liquid, one injection costs up to 550,000 yuan.
This news fully reflects the difficulties that my country currently faces in the field of rare disease drugs. Due to the limited number of people taking drugs for rare diseases and the huge research and development costs, original research companies need to recover costs within the patent period, and drug prices are bound to be expensive in the short term. It is unaffordable for ordinary families.
As the leading Internet service platform for personal critical illness help in China, Anxinchou has been actively participating in rare disease relief, using its unique advantages as an online relief platform to unite all sectors of society and participate in exploring and building relief models. And mobilize caring people to jointly expand the rescue fund pool in the future.
The rare diseases that seek the most help through Anxin Fundraising are myasthenia gravis, ALS, hemophilia, Wilson's disease, and immune encephalitis. The top five rare diseases with the highest amount of funds raised are immune encephalitis, myasthenia gravis, ALS, retinoid blastoma, and refractory disease.
The number of rare disease patients in China is estimated to exceed 20 million. Among them, not every patient is lucky enough to receive treatment. To achieve universal health, patients with rare diseases cannot be ignored. Let love expand its voice with the help of charity. In order to let more people have a deeper understanding of rare diseases, Anxin has been forging ahead on the road of helping patients with rare diseases. As a health protection platform, Anxinchou has always been exploring the path of public welfare. In caring for rare diseases, Anxinchou has always adhered to the classic model of public welfare.
As a social force participating in serious illness relief, "Anxinchou" will adhere to the concept of "everyone for one, one for everyone" and strive to help more patients with serious illnesses in need. With the development of the times, the Internet has broadened new ideas for serious illness relief. "Anxinchi" will use online channels to provide fast, effective and professional fundraising services to groups in need. By following the WeChat public account of the "Anxin Mutual Aid Plan", patients with serious illnesses can initiate fundraising, and the fundraising page can be spread among acquaintances on WeChat, thereby helping users raise medical expenses quickly and timely.
Anxinchou uses mobile Internet technology to move the offline behavior of "mutual aid" among the people to social networks, enriching the channels for patients to seek help from the public. Any family or patient with a serious illness or sudden accident can apply to launch a relief project in Anxin. In addition to donating relief funds to patients themselves, the public can also help seriously ill patients and families in trouble publish and disseminate help information more conveniently through sharing with relatives and friends, mobile payments, etc., so that donors can also provide assistance more conveniently.
The public welfare activity of "Shang Anxin raises funds to make love not rare", sending a loving support to families with rare diseases, making love not rare!