Today is the 17th International Day of Rare Diseases. As the theme of the International Day for Rare Diseases for three years, ShareYourColours once again calls on the whole society to attach importance to the cause of rare disease prevention and control and highlight the unique life value of rare disease patients.
The "1 in 10,000 Encounter" 2024 International Rare Disease Day Charity Gala and the 10th anniversary of the establishment of the Shanghai Rare Disease Prevention and Control Association and the 30th anniversary of the launch of Shanghai Education Television were held on the afternoon of February 28 at Shanghai Education Television.
According to the 2021 China Rare Disease Definition Research Report, diseases with a neonatal incidence of less than 1 10,000, a prevalence of less than 1 10,000, and a prevalence of less than 140,000 are classified as rare diseases. The theme of the party is "1 in 10,000 Encounters", which corresponds to this definition.
Through the sharing of touching stories, this evening party connected rare disease patients with medical treatment, drug research and development, policy support, and caring volunteer groups. It tells the story of their encounter with each other due to the probability of "1 in 10,000", outlining the overall picture of all walks of life working together to promote the cause of rare disease prevention and control.
Behind "1 in 10,000" is hope for the future.
In 2013, the girl Tongtong was admitted to the neonatal intensive care unit as soon as she was born, and since then, her growth and development have been significantly slow, and she was once labeled as "cerebral palsy" by doctors. Symptoms of this rare disease, which occurs in 1 in 100,000, are hypotonia, ataxia, delayed motor and mental development, intermittent deep and rapid breathing, and abnormal eye movements, many of which are very similar to those of children with cerebral palsy.
Due to the rarity of the disease, when Tongtong was first diagnosed, her mother Liu Wan couldn't even find a person who could communicate with the same disease, only knowing that there was no cure for this disease at present, and she could only train for a long time. In order to seize the **training** period before her daughter was three years old, Liu Wan resolutely threw herself into the "battle" against fate while wrestling with negativity day by day.
At the party scene, Tongtong, who loves to smile and talk, has an innocent expression and full of wealth on her face, and she can't see the shadow left by the illness in her heart. Today, at the age of 10, she is in the fourth grade of primary school, has participated in children's art groups in her spare time, and has also performed on the stage of the Shanghai International Arts Festival.
Ya Ya, a 10-year-old from Jiangsu, is a congenital osteogenesis imperfecta. The prevalence of this rare disease is about 1 in 10,000, and the most intuitive symptom is that it is very easy to fracture, and the patient is vividly called "porcelain dolls". Talking about how she felt when she first found out that her daughter was suffering from a rare disease, Pippi Phi, Yaya's mother, admitted: "There is nothing more desperate in life than this, and the failures and setbacks in studying and starting a business in the past nearly 40 years cannot be compared to this. At the same time, she frantically searched for information on the Internet, looked for hospitals, bought autobiographies of various porcelain dolls, and carried out self-rescue for a year and a half. Eventually, as she learns more about the disease itself and the development of medicine, Pippi slowly comes out of the trough and is full of hope for her daughter's future; "Now, the medical conditions are becoming more and more developed, although there is still no way to achieve osteogenesis insufficiency, but there are some surgeries and drugs to prevent and reduce frequent fractures. ”
In 2017, Pippi was invited to become a special illustrator for the genetics and rare disease science popularization platform "Pea Sir", specializing in drawing comic stories of rare disease patients. In the past 7 years, Pippi has participated in the creation of 74 issues of rare disease comics, and she hopes that through her own efforts, she can help more patients' families and avoid the detours she has taken, and also hopes that more people can understand rare diseases and give understanding, respect and help to the rare disease community.
Gather the efforts of all parties to improve the survival status of rare disease patients.
At the party scene, in addition to these touching and heart-warming stories, there were also concerns and support from all walks of life for the rare disease community.
The Shanghai Association for the Prevention and Treatment of Rare Diseases, together with Shanghai Educational Television and Shanghai Science and Technology Development Association, jointly initiated the establishment of the "Shanghai Rare Disease Prevention and Control Publicity and Technology Volunteer Service Team". Volunteers from Zhongshan Hospital of Fudan University, Huashan Hospital of Fudan University, Renji Hospital of Shanghai Jiao Tong University School of Medicine, Shanghai Institute of Pediatrics, Children's Hospital of Fudan University, Shanghai Children's Medical Center of Shanghai Jiao Tong University School of Medicine, Shanghai Children's Hospital, China Welfare Association International Peace Maternity and Child Health Hospital, Shanghai First Maternity and Child Health Hospital, and Shanghai University of Traditional Chinese Medicine joined the event. In the future, this volunteer team will give full play to its professional advantages to improve the living status of rare disease patients and improve the social awareness of rare diseases through popular science lectures and free consultations by experts.
The brand project "1 in 10,000 Encounters" public welfare science popularization exhibition was also officially launched at the party site, and at the same time, paintings of patients with rare diseases were collected from all over the country. The exhibition has been held for two sessions, this exhibition is led by Shanghai Education Television, Shanghai Rare Disease Prevention and Control Association, genetics and rare disease science popularization public welfare platform "Pea SIR", supported by Shanghai Science and Technology Development Association, and joined hands with more than 10 units in the fields of medical treatment, popular science, education and art in the city to express the colorful inner world of patients and reflect their rich life value in the main stadium exhibition, hospital tour, popular science lectures, etc. The exhibition is open to the whole society, and 44 rare disease patient communities from all over the world have participated.
Shanghai Minhang District Vanke Bilingual School and Shanghai Pudong New Area Private Vanke School donated 64 sets of Abbott Freeman Libre Sensors for blood glucose monitoring in children with type 1 diabetes to Shanghai Jing'an District Xiaotangren Youth and Children's Service Center.
The live broadcast of this evening will be broadcast on Shanghai Education Television at 21:25 on February 29, January 1 and April 4.
Author: Wang Xing.
Text: Wang Xingtu: Educational Television Editor: Li Chenyan Responsible Editor: Fan Liping.
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