China News Service, Beijing, September 24 (Reporter Zhang Su) In July 2019, the China Red Cross Foundation launched the "Rare Disease Care Action" to further systematically promote the diagnosis and treatment of rare diseases in terms of humanitarian assistance, doctor training, and platform construction. And rescue work.
As of July 2021, this operation has assisted more than 700 patients with rare diseases, trained more than 100 physicians, and had more than 40,000 beneficiaries of patient education and popular science.
The reporter learned the above data from the China Red Foundation on the 24th and learned that the "Rare Diseases Healthy China Tour" project initiated by the China Red Foundation and supported by Takeda China has been officially launched.
Guo Changjiang, chairman of the Chinese Red Cross Foundation, said that this project aims to unite forces from all walks of life to jointly explore the construction of a rare disease diagnosis and treatment system and a multi-level medical security pattern, shorten the path of treatment for patients with rare diseases, and promote the implementation of the rare disease drug guarantee mechanism. Meet the actual diagnosis and treatment needs of patients with rare diseases and their families, and improve their quality of life.
Guo Changjiang introduced that since 2014, the China Red Foundation has provided assistance to patients with rare diseases such as chubby Wiley syndrome, Marfan syndrome, hereditary epidermolysis bullosa, and Crohn's disease.
At the same time as the "Rare Diseases Healthy China Tour" project was launched, Wang Lin, secretary-general of the Joint Conference of Chairpersons of National Rare Disease Academic Societies, and Zhi Yuxiang, chief physician of the Allergy Department of Peking Union Medical College Hospital, and other experts interpreted the cases.
From social security, medical security, charity organizations, health economy, pharmaceutical economy, rare diseases, and related clinical experts in neurology, allergy, otolaryngology, pediatrics, etc., formed the project expert committee.
Experts said that due to the large differences in the clinical characteristics of patients with rare diseases, it is particularly important to explore the realization of multidisciplinary integration and disciplinary cooperation in specific clinical diagnosis and treatment practices.
Experts also suggest that while strengthening the training of clinicians, it is necessary to unblock the patient referral path through the rare disease diagnosis and treatment collaboration network, so as to provide patients with reasonable, effective and convenient medical services to the greatest extent.
Experts pointed out that the establishment of a multi-level medical security system for rare diseases is a key task in reducing the burden on patients and promoting the treatment of patients' diseases.
Experts also called for the integration and use of effective resources such as medical insurance, medical assistance, commercial insurance, social charity, and corporate responsibility, to establish a "controllable burden and shared responsibility" drug protection mechanism for rare diseases.
It is worth mentioning that on September 23, the "Rare Diseases Healthy China Tour-The First Training of Rare Disease Physicians" was held, and the first training was on the theme of hereditary angioedema.
In the follow-up, the project will invite experts to train clinicians in allergy, skin, ear, nose, and throat, digestion, emergency departments and other departments, and plans to gradually expand to 30 provinces (autonomous regions, municipalities) in the next 5 years.
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