Visy Pharmaceuticals and the Rare Disease Alliance have signed a strategic cooperation agreement to help China's cartilage developmental disease research.

On September 27, 2020, the registration and training of rare diseases of the National Rare Disease Clinic Collaboration Network was successfully held in Shanghai. During the
meeting, Vico Pharmaceuticals and the China Rare Disease Alliance formally signed a strategic cooperation agreement, the two sides will in the next five years, around the field of cartilage dysplis (ACH) to carry out a series of initiatives to improve the status of diagnosis and treatment in China ACH, improve awareness of rare diseases in China, especially ACH, so as to promote the overall level of diagnosis and treatment of rare diseases in China, and ultimately improve the treatment program and quality of life of rare diseases in China. After the signing of the
contract, the two sides will conduct multi-center patient registration (ApproaCH) research among patients with cartilage dysplia in China, including the establishment of a Chinese ACH patient queue, the completion of the patient status survey report, and the development of disease burden research;
the two sides will also focus on ACH pathogenesis, prenatal diagnostic screening and testing, disease diagnosis and clinical management, disease hazards and prognosis understanding and other aspects of in-depth research, to provide a basis for clinical diagnosis and prevention decision-making.
Li Linkang, Executive Director of the China Rare Diseases Alliance and Vice President of the China Hospital Association, signed a strategic cooperation agreement with Lu Anbang, CEO of The Chinese Rare Diseases Alliance, Li Linkang, Vice President of the China Hospital Association; Zhao Lin, Deputy Secretary-General of the China Rare Diseases Alliance; Professor Gu Xuefan, Director of the Shanghai Children's Rare Diseases Center and Director of Xinhua Hospital; Lu Anbang, Chief Medical Officer, etc.
the 18th National Congress of the Communist Party of China on the integration of high-quality resources to help the development of the cause of rare diseases in China, the CPC Central Committee and the State Council have adhered to the concept of "people-centered" and attached great importance to the management of rare diseases.
The National Health And Health Commission, the State Drug Administration, the State Administration of Medical Security and other relevant departments have taken a series of measures to improve the diagnosis and treatment capacity of rare diseases, the review and approval of drugs, and the accessability of drugs, and promoted the development of the health cause of rare diseases in China.
Although rare diseases are attracting more and more attention, but it has been a difficult point in today's medicine, with low prevalence, a wide variety of diseases, heavy burden of disease, difficult to treat and so on, such as cartilage development is incomplete, lack of flow data, lack of effective treatment drugs and treatment methods, patients have "no medicine to treat" the status quo.
years, China has developed rapidly in the clinical research work of rare diseases, clinical innovation, drug access and so on.
The Rare Disease Alliance gives full play to the organizational role of the Society, integrates the high-quality resources of clinical diagnosis and treatment of rare diseases, medical insurance, pharmaceutical enterprises, social welfare organizations and other parties to help promote medical research on rare diseases to make major breakthroughs, improve the level of prevention and protection of rare diseases, and promote collaborative innovation in the clinical, scientific research and development of orphan drugs for rare diseases.
Mr. Li Linkang, Executive Director of the China Rare Diseases Alliance and Vice President of the China Hospital Association, said, "This cooperation with Wei Wei, we hope that through joint efforts, we can give full play to our respective advantages, jointly promote the registration of rare diseases, standard-setting and capacity-enhancing, enrich the epidemiological data of rare diseases in China, provide decision-making basis for the formulation of national policies on medical insurance, medicine and medical care, and promote the development of China's rare disease prevention and protection cause, and achieve the goal of benefiting patients."
" to enhance cognition and care, make up for the gaps in diagnosis and treatment, so that patients with rare diseases no longer "one-way" cartilage development is not all due to cartilage osteopathic defects of congenital developmental abnormalities, the incidence rate of 1:25,000 Live babies, mainly affecting long bones, clinical manifestations of disproportionately small size and a series of bone, nerve and other systemic complications, patients are under great physical and psychological pressure, it is difficult to integrate into society, in employment, marriage, life and other aspects of difficulties.
addition, poverty due to disease, return to poverty due to illness is the status quo of many cartilage development patients and their families.
" China's cartilage development related to clinical research, publicity and education activities are very few, the public awareness of the disease is low, medical workers on the disease awareness and attention also need to be improved.
"At present, there is no fundamental treatment for patients with cartilage development worldwide, and Chinese general practitioners lack relevant expertise and clinical experience," said Professor Gu Xuefan, director of the Shanghai Children's Rare Diseases Center and director of Shanghai Xinhua Hospital.
However, patients with cartilage development are prone to serious complications, such as hydrocephalus, obstructive sleep apnea, etc., there is a higher risk of death, the disease to patients and families bring a huge burden, so the establishment of expert consensus on this type of disease is particularly important to fill the gaps in diagnosis and treatment.
" Vico Pharmaceuticals CEO Lu Anbang said: "Vico Pharmaceuticals is committed to becoming an expert in endocrine-related treatments, and our partnership with the Rare Diseases Alliance is to realize this great dream and commitment to patients.
In the future, We will work in-depth with the Alliance for Rare Diseases, and we will also introduce the world's leading treatments and innovative drugs to China, so that more Chinese patients can benefit from the world's advanced and reliable treatment programs earlier, help Chinese cartilage development patients, and make a real contribution to the development of China's rare diseases cause, helping to achieve 'Healthy China 2030'.
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