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The reporter was informed on the 9th that the special fund for rare disease care for "Nahren for Love" was launched here, which means that the "Rare Disease Healthy China Tour" project officially kicked off
.
.
Bei Xiaochao, vice chairman and secretary-general of the Chinese Red Cross Foundation, told reporters that the Chinese Red Cross will join hands with well-known companies to create a rare disease diagnosis and treatment ecosystem, promote the development of rare diseases in China, and improve the availability of innovative drugs and the availability of patients.
The ability to manage the course of the disease, thereby promoting the improvement of treatment benefits for patients
.
The ability to manage the course of the disease, thereby promoting the improvement of treatment benefits for patients
.
In recent years, as the society and the public pay more and more attention to rare diseases and patient groups, favorable national medical insurance policies have appeared frequently, rare disease research in China has gradually deepened, relevant data has been accumulated, and the ability of clinicians to diagnose and treat rare diseases has been continuously improved.
Great progress has been made
.
Great progress has been made
.
In May 2018, the Health Commission and other five departments jointly issued the "First Batch of Rare Disease Catalog", which included 121 rare diseases, and these 121 rare diseases have diagnosis and treatment guidelines
.
China has established a rare disease reporting system.
Once a case is found in a hospital, it will be reported to the National Health Commission
.
In June 2018, China opened a "green channel" for the introduction of foreign rare disease drugs
.
.
China has established a rare disease reporting system.
Once a case is found in a hospital, it will be reported to the National Health Commission
.
In June 2018, China opened a "green channel" for the introduction of foreign rare disease drugs
.
The "Rare Disease Health China Tour" project aims to unite all sectors of society 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 rare disease patients, promote the implementation of the rare disease medication guarantee mechanism, and help meet rare disease patients And their family’s actual medical needs to improve their quality of life
.
.
In an interview with reporters, Professor Li Dingguo, chairman of the Shanghai Rare Disease Prevention and Control Foundation, believes that the government, patients, enterprises, and doctors have significantly increased the awareness of rare diseases, which is a reflection of the progress of social civilization
.
"Doctors who can see rare diseases are even rarer than patients with rare diseases.
" This situation is now better than in the past, but this problem still exists
.
Professor Li Dingguo pointed out that many doctors may not be able to diagnose even if they encounter patients with rare diseases
.
He believes that doctor training is a top priority
.
It is understood that medical associations in many places have established rare disease professional societies to carry out standardized training for doctors at all levels every year
.
.
"Doctors who can see rare diseases are even rarer than patients with rare diseases.
" This situation is now better than in the past, but this problem still exists
.
Professor Li Dingguo pointed out that many doctors may not be able to diagnose even if they encounter patients with rare diseases
.
He believes that doctor training is a top priority
.
It is understood that medical associations in many places have established rare disease professional societies to carry out standardized training for doctors at all levels every year
.
Professor Li Dingguo told reporters that more than 80% of rare diseases are related to genetic factors, and more than 70% of them become childhood-onset; paying attention to rare diseases is also concerned with the future
.
The use of medicines and the affordability of medicines are the common aspirations of patients with rare diseases
.
95% of rare diseases cannot be treated, and only 5% of rare diseases have therapeutic drugs; some rare disease drugs need to be taken for life and cannot be stopped.
They are expensive and become a heavy burden
.
The expert bluntly said: "We need to do everything possible to continuously call for more attention and support to patients
.
" In Li Dingguo's view, from the perspective of rare disease prevention and treatment, preventive screening is the most important
.
At the same time, Li Dingguo called for ensuring the development and promotion of rare disease drugs from the legislative level
.
He pointed out that rare disease treatment drugs are all at a high level of research and development, and the rare disease legislative council will promote the improvement of the pharmaceutical industry
.
.
The use of medicines and the affordability of medicines are the common aspirations of patients with rare diseases
.
95% of rare diseases cannot be treated, and only 5% of rare diseases have therapeutic drugs; some rare disease drugs need to be taken for life and cannot be stopped.
They are expensive and become a heavy burden
.
The expert bluntly said: "We need to do everything possible to continuously call for more attention and support to patients
.
" In Li Dingguo's view, from the perspective of rare disease prevention and treatment, preventive screening is the most important
.
At the same time, Li Dingguo called for ensuring the development and promotion of rare disease drugs from the legislative level
.
He pointed out that rare disease treatment drugs are all at a high level of research and development, and the rare disease legislative council will promote the improvement of the pharmaceutical industry
.
It is reported that the availability of drugs for rare diseases is one of the issues of great concern to the patient community.
In the process of dealing with the challenges of rare diseases, all sectors of society work hand in hand to jointly establish a multi-level medical security system for the group of rare disease patients in China.
Especially important
.
In the process of dealing with the challenges of rare diseases, all sectors of society work hand in hand to jointly establish a multi-level medical security system for the group of rare disease patients in China.
Especially important
.
During the interview, the reporter learned that all parties are exploring innovative payment projects to improve the accessibility and affordability of innovative treatments for rare diseases, exploring the construction of a multi-level medical security system, and reducing the overall economic burden on patients, society, and the government
.
In an interview with reporters, Shan Guohong, the global senior vice president of Takeda Pharmaceuticals and the president of Takeda China, a well-known multinational pharmaceutical company, believes that commercial insurance and basic medical insurance should be effectively complemented, while at the same time guiding patient groups and public welfare organizations to cooperate closely to continue to carry out continuous patient care, Pharmaceutical assistance and other projects, and joint exploration of commercial insurance projects by pharmaceutical companies and commercial insurance and other related institutions can help solve the actual needs of patients
.
.
In an interview with reporters, Shan Guohong, the global senior vice president of Takeda Pharmaceuticals and the president of Takeda China, a well-known multinational pharmaceutical company, believes that commercial insurance and basic medical insurance should be effectively complemented, while at the same time guiding patient groups and public welfare organizations to cooperate closely to continue to carry out continuous patient care, Pharmaceutical assistance and other projects, and joint exploration of commercial insurance projects by pharmaceutical companies and commercial insurance and other related institutions can help solve the actual needs of patients
.
It is reported that taking hemophilia as an example, China has gradually improved the regional collaboration network for the diagnosis and treatment of hemophilia, and initially established a hierarchical diagnosis and treatment system for hemophilia, which has played a positive role in improving the ability of diagnosis and treatment of hemophilia and the ability of patient disease management.
.
At the end of 2020, myPKFiT, a management tool for hemophilia A? Approved to be listed in China, medical workers can work together to "tailor-make" individualized treatment plans based on each patient's situation, fully opening a new journey of individualized treatment of hemophilia in China
.
Until October 2021, myPKFiT? It has been applied in more than 40 hospitals across the country , benefiting more than 200 patients
.
However, compared with other developed countries, the number of hemophilia centers at all levels in China is still small, and the level is uneven, and the needs of patients are still unmet
.
.
At the end of 2020, myPKFiT, a management tool for hemophilia A? Approved to be listed in China, medical workers can work together to "tailor-make" individualized treatment plans based on each patient's situation, fully opening a new journey of individualized treatment of hemophilia in China
.
Until October 2021, myPKFiT? It has been applied in more than 40 hospitals across the country , benefiting more than 200 patients
.
However, compared with other developed countries, the number of hemophilia centers at all levels in China is still small, and the level is uneven, and the needs of patients are still unmet
.
On the same day, the reporter learned that the China Rare Diseases Alliance, the Chinese Hemophilia Collaborative Group (HTCCNC) and Takeda Pharmaceutical signed a cooperation agreement on the "Percentage Pilot" Multidisciplinary Diagnosis and Treatment Capacity Improvement Project for Hemophilia
.
All parties will use a multidisciplinary diagnosis and treatment model to provide hemophilia patients with training and guidance on medicines, treatment, related disease education, and family treatment
.
.
All parties will use a multidisciplinary diagnosis and treatment model to provide hemophilia patients with training and guidance on medicines, treatment, related disease education, and family treatment
.
Professor Yang Renchi, director of the Thrombosis Hemostasis Diagnosis and Treatment Center of the Chinese Academy of Medical Sciences Hematology Hospital, told reporters: "The establishment of a hemophilia grading diagnosis and treatment system has important reference significance for the prevention and treatment of rare diseases in the future
.
It is well known that China's rare disease patients are a key factor in seeking medical advice.
The road is very long, and there is no medicine available after diagnosis
.
Therefore, using the hemophilia center as a model, uniting all sectors of society to promote the construction of the tertiary diagnosis and treatment of hemophilia, and promote the improvement of the level of diagnosis and treatment of hemophilia, it will definitely be included in China.
The development of the prevention and treatment of rare diseases, including hemophilia, has brought benchmarking and far-reaching impact
.
"
.
It is well known that China's rare disease patients are a key factor in seeking medical advice.
The road is very long, and there is no medicine available after diagnosis
.
Therefore, using the hemophilia center as a model, uniting all sectors of society to promote the construction of the tertiary diagnosis and treatment of hemophilia, and promote the improvement of the level of diagnosis and treatment of hemophilia, it will definitely be included in China.
The development of the prevention and treatment of rare diseases, including hemophilia, has brought benchmarking and far-reaching impact
.
"
The reporter was informed on the 9th that the special fund for rare disease care for "Nahren for Love" was launched here, which means that the "Rare Disease Healthy China Tour" project officially kicked off
.
.
Bei Xiaochao, vice chairman and secretary-general of the Chinese Red Cross Foundation, told reporters that the Chinese Red Cross will join hands with well-known companies to create a rare disease diagnosis and treatment ecosystem, promote the development of rare diseases in China, and improve the availability of innovative drugs and the availability of patients.
The ability to manage the course of the disease, thereby promoting the improvement of treatment benefits for patients
.
The ability to manage the course of the disease, thereby promoting the improvement of treatment benefits for patients
.
In recent years, as the society and the public pay more and more attention to rare diseases and patient groups, favorable national medical insurance policies have appeared frequently, rare disease research in China has gradually deepened, relevant data has been accumulated, and the ability of clinicians to diagnose and treat rare diseases has been continuously improved.
Great progress has been made
.
Great progress has been made
.
In May 2018, the Health Commission and other five departments jointly issued the "First Batch of Rare Disease Catalog", which included 121 rare diseases, and these 121 rare diseases have diagnosis and treatment guidelines
.
China has established a rare disease reporting system.
Once a case is found in a hospital, it will be reported to the National Health Commission
.
In June 2018, China opened a "green channel" for the introduction of foreign rare disease drugs
.
.
China has established a rare disease reporting system.
Once a case is found in a hospital, it will be reported to the National Health Commission
.
In June 2018, China opened a "green channel" for the introduction of foreign rare disease drugs
.
The "Rare Disease Health China Tour" project aims to unite all sectors of society 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 rare disease patients, promote the implementation of the rare disease medication guarantee mechanism, and help meet rare disease patients And their family’s actual medical needs to improve their quality of life
.
.
In an interview with reporters, Professor Li Dingguo, chairman of the Shanghai Rare Disease Prevention and Control Foundation, believes that the government, patients, enterprises, and doctors have significantly increased the awareness of rare diseases, which is a reflection of the progress of social civilization
.
"Doctors who can see rare diseases are even rarer than patients with rare diseases.
" This situation is now better than in the past, but this problem still exists
.
Professor Li Dingguo pointed out that many doctors may not be able to diagnose even if they encounter patients with rare diseases
.
He believes that doctor training is a top priority
.
It is understood that medical associations in many places have established rare disease professional societies to carry out standardized training for doctors at all levels every year
.
.
"Doctors who can see rare diseases are even rarer than patients with rare diseases.
" This situation is now better than in the past, but this problem still exists
.
Professor Li Dingguo pointed out that many doctors may not be able to diagnose even if they encounter patients with rare diseases
.
He believes that doctor training is a top priority
.
It is understood that medical associations in many places have established rare disease professional societies to carry out standardized training for doctors at all levels every year
.
Professor Li Dingguo told reporters that more than 80% of rare diseases are related to genetic factors, and more than 70% of them become childhood-onset; paying attention to rare diseases is also concerned with the future
.
The use of medicines and the affordability of medicines are the common aspirations of patients with rare diseases
.
95% of rare diseases cannot be treated, and only 5% of rare diseases have therapeutic drugs; some rare disease drugs need to be taken for life and cannot be stopped.
They are expensive and become a heavy burden
.
The expert bluntly said: "We need to do everything possible to continuously call for more attention and support to patients
.
" In Li Dingguo's view, from the perspective of rare disease prevention and treatment, preventive screening is the most important
.
At the same time, Li Dingguo called for ensuring the development and promotion of rare disease drugs from the legislative level
.
He pointed out that rare disease treatment drugs are all at a high level of research and development, and the rare disease legislative council will promote the improvement of the pharmaceutical industry
.
.
The use of medicines and the affordability of medicines are the common aspirations of patients with rare diseases
.
95% of rare diseases cannot be treated, and only 5% of rare diseases have therapeutic drugs; some rare disease drugs need to be taken for life and cannot be stopped.
They are expensive and become a heavy burden
.
The expert bluntly said: "We need to do everything possible to continuously call for more attention and support to patients
.
" In Li Dingguo's view, from the perspective of rare disease prevention and treatment, preventive screening is the most important
.
At the same time, Li Dingguo called for ensuring the development and promotion of rare disease drugs from the legislative level
.
He pointed out that rare disease treatment drugs are all at a high level of research and development, and the rare disease legislative council will promote the improvement of the pharmaceutical industry
.
It is reported that the availability of drugs for rare diseases is one of the issues of great concern to the patient community.
In the process of dealing with the challenges of rare diseases, all sectors of society work hand in hand to jointly establish a multi-level medical security system for the group of rare disease patients in China.
Especially important
.
In the process of dealing with the challenges of rare diseases, all sectors of society work hand in hand to jointly establish a multi-level medical security system for the group of rare disease patients in China.
Especially important
.
During the interview, the reporter learned that all parties are exploring innovative payment projects to improve the accessibility and affordability of innovative treatments for rare diseases, exploring the construction of a multi-level medical security system, and reducing the overall economic burden on patients, society, and the government
.
In an interview with reporters, Shan Guohong, the global senior vice president of Takeda Pharmaceuticals and the president of Takeda China, a well-known multinational pharmaceutical company, believes that commercial insurance and basic medical insurance should be effectively complemented, while at the same time guiding patient groups and public welfare organizations to cooperate closely to continue to carry out continuous patient care, Pharmaceutical assistance and other projects, and joint exploration of commercial insurance projects by pharmaceutical companies and commercial insurance and other related institutions can help solve the actual needs of patients
.
.
In an interview with reporters, Shan Guohong, the global senior vice president of Takeda Pharmaceuticals and the president of Takeda China, a well-known multinational pharmaceutical company, believes that commercial insurance and basic medical insurance should be effectively complemented, while at the same time guiding patient groups and public welfare organizations to cooperate closely to continue to carry out continuous patient care, Pharmaceutical assistance and other projects, and joint exploration of commercial insurance projects by pharmaceutical companies and commercial insurance and other related institutions can help solve the actual needs of patients
.
It is reported that taking hemophilia as an example, China has gradually improved the regional collaboration network for the diagnosis and treatment of hemophilia, and initially established a hierarchical diagnosis and treatment system for hemophilia, which has played a positive role in improving the ability of diagnosis and treatment of hemophilia and the ability of patient disease management.
.
At the end of 2020, myPKFiT, a management tool for hemophilia A? Approved to be listed in China, medical workers can work together to "tailor-make" individualized treatment plans based on each patient's situation, fully opening a new journey of individualized treatment of hemophilia in China
.
Until October 2021, myPKFiT? It has been applied in more than 40 hospitals across the country , benefiting more than 200 patients
.
However, compared with other developed countries, the number of hemophilia centers at all levels in China is still small, and the level is uneven, and the needs of patients are still unmet
.
.
At the end of 2020, myPKFiT, a management tool for hemophilia A? Approved to be listed in China, medical workers can work together to "tailor-make" individualized treatment plans based on each patient's situation, fully opening a new journey of individualized treatment of hemophilia in China
.
Until October 2021, myPKFiT? It has been applied in more than 40 hospitals across the country , benefiting more than 200 patients
.
However, compared with other developed countries, the number of hemophilia centers at all levels in China is still small, and the level is uneven, and the needs of patients are still unmet
.
On the same day, the reporter learned that the China Rare Diseases Alliance, the Chinese Hemophilia Collaborative Group (HTCCNC) and Takeda Pharmaceutical signed a cooperation agreement on the "Percentage Pilot" Multidisciplinary Diagnosis and Treatment Capacity Improvement Project for Hemophilia
.
All parties will use a multidisciplinary diagnosis and treatment model to provide hemophilia patients with training and guidance on medicines, treatment, related disease education, and family treatment
.
.
All parties will use a multidisciplinary diagnosis and treatment model to provide hemophilia patients with training and guidance on medicines, treatment, related disease education, and family treatment
.
Professor Yang Renchi, director of the Thrombosis Hemostasis Diagnosis and Treatment Center of the Chinese Academy of Medical Sciences Hematology Hospital, told reporters: "The establishment of a hemophilia grading diagnosis and treatment system has important reference significance for the prevention and treatment of rare diseases in the future
.
It is well known that China's rare disease patients are a key factor in seeking medical advice.
The road is very long, and there is no medicine available after diagnosis
.
Therefore, using the hemophilia center as a model, uniting all sectors of society to promote the construction of the tertiary diagnosis and treatment of hemophilia, and promote the improvement of the level of diagnosis and treatment of hemophilia, it will definitely be included in China.
The development of the prevention and treatment of rare diseases, including hemophilia, has brought benchmarking and far-reaching impact
.
"
.
It is well known that China's rare disease patients are a key factor in seeking medical advice.
The road is very long, and there is no medicine available after diagnosis
.
Therefore, using the hemophilia center as a model, uniting all sectors of society to promote the construction of the tertiary diagnosis and treatment of hemophilia, and promote the improvement of the level of diagnosis and treatment of hemophilia, it will definitely be included in China.
The development of the prevention and treatment of rare diseases, including hemophilia, has brought benchmarking and far-reaching impact
.
"
The reporter was informed on the 9th that the special fund for rare disease care for "Nahren for Love" was launched here, which means that the "Rare Disease Healthy China Tour" project officially kicked off
.
.
Bei Xiaochao, vice chairman and secretary-general of the Chinese Red Cross Foundation, told reporters that the Chinese Red Cross will join hands with well-known companies to create a rare disease diagnosis and treatment ecosystem, promote the development of rare diseases in China, and improve the availability of innovative drugs and the availability of patients.
The ability to manage the course of the disease, thereby promoting the improvement of treatment benefits for patients
.
The ability to manage the course of the disease, thereby promoting the improvement of treatment benefits for patients
.
In recent years, as the society and the public pay more and more attention to rare diseases and patient groups, favorable national medical insurance policies have appeared frequently, rare disease research in China has gradually deepened, relevant data has been accumulated, and the ability of clinicians to diagnose and treat rare diseases has been continuously improved.
Great progress has been made
.
Great progress has been made
.
In May 2018, the Health Commission and other five departments jointly issued the "First Batch of Rare Disease Catalog", which included 121 rare diseases, and these 121 rare diseases have diagnosis and treatment guidelines
.
China has established a rare disease reporting system.
Once a case is found in a hospital, it will be reported to the National Health Commission
.
In June 2018, China opened a "green channel" for the introduction of foreign rare disease drugs
.
.
China has established a rare disease reporting system.
Once a case is found in a hospital, it will be reported to the National Health Commission
.
In June 2018, China opened a "green channel" for the introduction of foreign rare disease drugs
.
The "Rare Disease Health China Tour" project aims to unite all sectors of society 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 rare disease patients, promote the implementation of the rare disease medication guarantee mechanism, and help meet rare disease patients And their family’s actual medical needs to improve their quality of life
.
Healthy, healthy, healthy.
In an interview with reporters, Professor Li Dingguo, chairman of the Shanghai Rare Disease Prevention and Control Foundation, believes that the government, patients, enterprises, and doctors have significantly increased the awareness of rare diseases, which is a reflection of the progress of social civilization
.
"Doctors who can see rare diseases are even rarer than patients with rare diseases.
" This situation is now better than in the past, but this problem still exists
.
Professor Li Dingguo pointed out that many doctors may not be able to diagnose even if they encounter patients with rare diseases
.
He believes that doctor training is a top priority
.
It is understood that medical associations in many places have established rare disease professional societies to carry out standardized training for doctors at all levels every year
.
.
"Doctors who can see rare diseases are even rarer than patients with rare diseases.
" This situation is now better than in the past, but this problem still exists
.
Professor Li Dingguo pointed out that many doctors may not be able to diagnose even if they encounter patients with rare diseases
.
He believes that doctor training is a top priority
.
It is understood that medical associations in many places have established rare disease professional societies to carry out standardized training for doctors at all levels every year
.
Professor Li Dingguo told reporters that more than 80% of rare diseases are related to genetic factors, and more than 70% of them become childhood-onset; paying attention to rare diseases is also concerned with the future
.
The use of medicines and the affordability of medicines are the common aspirations of patients with rare diseases
.
95% of rare diseases cannot be treated, and only 5% of rare diseases have therapeutic drugs; some rare disease drugs need to be taken for life and cannot be stopped.
They are expensive and become a heavy burden
.
The expert bluntly said: "We need to do everything possible to continuously call for more attention and support to patients
.
" In Li Dingguo's view, from the perspective of rare disease prevention and treatment, preventive screening is the most important
.
At the same time, Li Dingguo called for ensuring the development and promotion of rare disease drugs from the legislative level
.
He pointed out that rare disease treatment drugs are all at a high level of research and development, and the rare disease legislative council will promote the improvement of the pharmaceutical industry
.
.
The use of medicines and the affordability of medicines are the common aspirations of patients with rare diseases
.
95% of rare diseases cannot be treated, and only 5% of rare diseases have therapeutic drugs; some rare disease drugs need to be taken for life and cannot be stopped.
They are expensive and become a heavy burden
.
The expert bluntly said: "We need to do everything possible to continuously call for more attention and support to patients
.
" In Li Dingguo's view, from the perspective of rare disease prevention and treatment, preventive screening is the most important
.
At the same time, Li Dingguo called for ensuring the development and promotion of rare disease drugs from the legislative level
.
He pointed out that rare disease treatment drugs are all at a high level of research and development, and the rare disease legislative council will promote the improvement of the pharmaceutical industry
.
It is reported that the availability of drugs for rare diseases is one of the issues of great concern to the patient community.
In the process of dealing with the challenges of rare diseases, all sectors of society work hand in hand to jointly establish a multi-level medical security system for the group of rare disease patients in China.
Especially important
.
In the process of dealing with the challenges of rare diseases, all sectors of society work hand in hand to jointly establish a multi-level medical security system for the group of rare disease patients in China.
Especially important
.
During the interview, the reporter learned that all parties are exploring innovative payment projects to improve the accessibility and affordability of innovative treatments for rare diseases, exploring the construction of a multi-level medical security system, and reducing the overall economic burden on patients, society, and the government
.
In an interview with reporters, Shan Guohong, the global senior vice president of Takeda Pharmaceuticals and the president of Takeda China, a well-known multinational pharmaceutical company, believes that commercial insurance and basic medical insurance should be effectively complemented, while at the same time guiding patient groups and public welfare organizations to cooperate closely to continue to carry out continuous patient care, Pharmaceutical assistance and other projects, and joint exploration of commercial insurance projects by pharmaceutical companies and commercial insurance and other related institutions can help solve the actual needs of patients
.
Drugs Drugs Drugs Pharmaceutical companies Pharmaceutical pharmaceutical business enterprises.
In an interview with reporters, Shan Guohong, the global senior vice president of Takeda Pharmaceuticals and the president of Takeda China, a well-known multinational pharmaceutical company, believes that commercial insurance and basic medical insurance should be effectively complemented, while at the same time guiding patient groups and public welfare organizations to cooperate closely to continue to carry out continuous patient care, Pharmaceutical assistance and other projects, and joint exploration of commercial insurance projects by pharmaceutical companies and commercial insurance and other related institutions can help solve the actual needs of patients
.
It is reported that taking hemophilia as an example, China has gradually improved the regional collaboration network for the diagnosis and treatment of hemophilia, and initially established a hierarchical diagnosis and treatment system for hemophilia, which has played a positive role in improving the ability of diagnosis and treatment of hemophilia and the ability of patient disease management.
.
At the end of 2020, myPKFiT, a management tool for hemophilia A? Approved to be listed in China, medical workers can work together to "tailor-make" individualized treatment plans based on each patient's situation, fully opening a new journey of individualized treatment of hemophilia in China
.
Until October 2021, myPKFiT? It has been applied in more than 40 hospitals across the country , benefiting more than 200 patients
.
However, compared with other developed countries, the number of hemophilia centers at all levels in China is still small, and the level is uneven, and the needs of patients are still unmet
.
Hospital hospital hospital.
At the end of 2020, myPKFiT, a management tool for hemophilia A? Approved to be listed in China, medical workers can work together to "tailor-make" individualized treatment plans based on each patient's situation, fully opening a new journey of individualized treatment of hemophilia in China
.
Until October 2021, myPKFiT? It has been applied in more than 40 hospitals across the country , benefiting more than 200 patients
.
However, compared with other developed countries, the number of hemophilia centers at all levels in China is still small, and the level is uneven, and the needs of patients are still unmet
.
On the same day, the reporter learned that the China Rare Diseases Alliance, the Chinese Hemophilia Collaborative Group (HTCCNC) and Takeda Pharmaceutical signed a cooperation agreement on the "Percentage Pilot" Multidisciplinary Diagnosis and Treatment Capacity Improvement Project for Hemophilia
.
All parties will use a multidisciplinary diagnosis and treatment model to provide hemophilia patients with training and guidance on medicines, treatment, related disease education, and family treatment
.
.
All parties will use a multidisciplinary diagnosis and treatment model to provide hemophilia patients with training and guidance on medicines, treatment, related disease education, and family treatment
.
Professor Yang Renchi, director of the Thrombosis Hemostasis Diagnosis and Treatment Center of the Chinese Academy of Medical Sciences Hematology Hospital, told reporters: "The establishment of a hemophilia grading diagnosis and treatment system has important reference significance for the prevention and treatment of rare diseases in the future
.
It is well known that China's rare disease patients are a key factor in seeking medical advice.
The road is very long, and there is no medicine available after diagnosis
.
Therefore, using the hemophilia center as a model, uniting all sectors of society to promote the construction of the tertiary diagnosis and treatment of hemophilia, and promote the improvement of the level of diagnosis and treatment of hemophilia, it will definitely be included in China.
The development of the prevention and treatment of rare diseases, including hemophilia, has brought benchmarking and far-reaching impact
.
"
.
It is well known that China's rare disease patients are a key factor in seeking medical advice.
The road is very long, and there is no medicine available after diagnosis
.
Therefore, using the hemophilia center as a model, uniting all sectors of society to promote the construction of the tertiary diagnosis and treatment of hemophilia, and promote the improvement of the level of diagnosis and treatment of hemophilia, it will definitely be included in China.
The development of the prevention and treatment of rare diseases, including hemophilia, has brought benchmarking and far-reaching impact
.
"
