Dongfang.com reporter Liu Yilin reported on February 26: On the occasion of the International Rare Disease Day in 2022, the “Ginkgo Rare Skin Disease (GPP) Care Center”, a public welfare organization for patients with rare skin diseases in China, was officially established in Shanghai today. .
This is my country’s first public welfare organization for patients with Generalized Pustular Psoriasis (GPP).
GPP is a rare but serious skin disorder. According to statistics, only 1-2 people in every 100,000 people in China suffer from GPP. In acute attacks of the disease, the patient’s skin turns red and many sterile pustules erupt in various areas of the body, with symptoms of fever, chills, and painful skin lesions, and in severe cases, organ failure and infectious complications disease, and even life-threatening. In acute GPP attacks, not only is the severity unpredictable, but the timing of its onset is equally elusive. The disease can flare up at any time, last for weeks, and take months to heal, and many patients even experience persistent symptoms between acute episodes.
“Because the exact etiology of GPP is still unclear, and there is no recognized diagnosis and treatment standard, the current treatment methods lack in-depth and lasting efficacy, and patients are faced with the dilemma of difficult diagnosis and treatment,” Zhejiang Professor Zheng Min, honorary director of the Department of Dermatology of the Second Affiliated Hospital of the University School of Medicine, pointed out: “In addition to the impact of the disease on the health of patients, the dilemma of disease diagnosis and treatment also has a huge impact on patients. Social relations and family burdens are under enormous pressure.”
It is reported that in June 2021, with the public welfare support of Boehringer Ingelheim, the Kode Center for Rare Diseases launched a generalized pustule in China. Type psoriasis (GPP) patient tissue incubation project. In just half a year, the project has developed a patient community covering more than 100 people across the country, and successively launched the WeChat public account of the patient service platform “GPP Information Platform”, and held the first China GPP doctor-patient exchange. Patient support activities including meetings, etc., promote in-depth communication between patients and friends, doctors and patients, help clinicians understand the real demands of patients, actively explore to improve the survival status of GPP patients, and create favorable conditions for the establishment of patient public welfare organizations .
“In recent years, medical research in the field of GPP disease has made great progress, bringing new hope for the treatment of the disease. In addition to the innovation of treatment plans, the change of the GPP diagnosis and treatment pattern also requires Relevant parties work together to promote disease diagnosis, social security and other aspects,” said Professor Xu Jinhua, director of the Department of Dermatology at Huashan Hospital Affiliated to Fudan University. “As a doctor, we hope to approach these patients, listen to their voices, and apply the latest scientific knowledge to the The patient organization will become a bridge for us to get close to patients, allowing us to better serve them, improve the GPP diagnosis and treatment environment, and ultimately give patients a higher quality of life.”
It is understood that after the establishment of the “Ginkgo Rare Skin Disease (GPP) Care Center” patient public welfare organization, it will regularly carry out GPP patient education and doctor-patient exchange activities, publicize and popularize GPP disease knowledge to the public, and promote the diagnosis and treatment of GPP rare skin diseases and medicines Accessibility and help GPP patients receive standardized treatment as soon as possible.