On April 11, Yang Shuo of China Social Welfare Foundation launched a comprehensive service platform for rare patients called "Reddy Family".
rare diseases (rare diseases), also known as "orphan diseases", refer to diseases with very low incidence. Generally, diseases with less than one thousand of the total population are classified as rare diseases. But due to the population base, the absolute number of rare diseases in China has exceeded 20 million.
According to the Research Report on the Survival of Rare Disease Groups released in 2016, which analyzed the data of 142 kinds and 1,771 surveys, rare patients are faced with three dilemmas: one is the serious shortage of medical resources and the high cost of diagnosis and treatment; Second, the low level of education, employment is severely limited, low employment rate; As well as life pressure, the phenomenon of poverty due to disease is common.
Yang Shuo, 38, is one of his friends with progressive muscular dystrophy, a rare condition that affects one in 25 million people. Twenty-eight years ago, doctors said he would only live to the age of 15 to 18 and would not reach adulthood. He lost the ability to walk 24 years ago, but that didn't stop him. Starting with 6,000 yuan, he is now an admirable entrepreneur and has set up the Beijing Yang Shuo Care Center for Rare Patients.
Seeing the three difficulties of rare patients, Yang Shuo raised an angel fund of 3 million yuan by himself in order to improve the education level of rare patients, create a new employment mode, and alleviate the poor living conditions of patients' families due to illness. In cooperation with Beijing Baotong Kexun Network Technology Co., LTD., Yang Shuo Plan of China Social Welfare Foundation built a comprehensive service platform for rare patients of Ruidi family. It also promises to provide free access to rare patient organizations and patients.
The launch ceremony of the service platform was held at 10:00 am on April 11 at the office building of Beijing Civil Affairs Bureau. Leaders and representatives of International Volunteers Association, China Social Welfare Foundation and other organizations attended the grand meeting. Representatives of Friends of Rare Patients also attended and spoke.
Yang Shuo introduced the "Reddy's" care station project. "Reddy's family name comes from rare diseases, which is the English transliteration of rare diseases, and it means' ready '; It means we will be ready for more challenges."
Yang Shuo's original intention to establish this project is to focus on the living environment of patients with rare diseases, focus on the living environment of patients with rare diseases, and use Internet technology as support to change the living environment of patients with rare diseases, so that patients with rare diseases can "gather into a tower" and attract social attention.
At the same time, he looks forward to creating a new public welfare model based on the traditional public welfare model, with the creation of shared value as the driving force. He not only gathers resources from foundations and pharmaceutical companies, but also hopes that more social resources can participate in the integrated development of rare disease groups and resources from all walks of life, and finally realizes the mission of "helping rare disease groups improve their living conditions, improve their living quality, and obtain happiness". And explore a new public welfare channel, integration and win-win.
According to the person in charge, Redhome platform is expected to cover 60% of rare disease organizations in the first stage, with about 100,000 registered users. We hope to reach the goal of covering 80% of rare patients' organizations and 500,000 patients' participation within 18 months. "Early promotion in the patient group, so that more patients and friends use. In the future, we will expand the participation of multiple sources. Yang is confident about the development of the platform.
As the founder of the platform and as a friend of rare patients, Yang Shuo hopes that "more and more social groups and volunteers will become members of the platform and make their own contributions to rare diseases; It is also believed that more and more social organizations and enterprises will share social resources and create corporate strategic shared value and corporate social value on the road to the operation of Redhome's innovative public welfare model. We also look forward to more and more capital angels who care about public welfare to join us and jointly promote the transformation of China's rare disease public welfare innovation model with a forward-looking new perspective."
