On February 29, the World Rare Disease Day, Peking Union Medical College Hospital set up an innovative development research institute for rare disease diagnosis and treatment, and launched the first independent specialized medical ward for rare diseases in China to improve the diagnosis and treatment of rare diseases.
On the morning of February 29, accompanied by her mother, Ms. Ai, the patient Yaya was admitted to the rare disease medical ward of Union Medical College Hospital, becoming one of the first batch of inpatients in the new ward. Yaya is 7 years old this year. She suffered from a rare gene mutation disease - phlogiston related periodic syndrome at birth. During her growth, she has been accompanied by repeated fever, rash and other problems. Yaya has been treated in many hospitals in her hometown of Inner Mongolia, but her condition has never been cured.
Ms. Ai learned that Peking Union Medical College Hospital has a rare disease medical discipline and brought her daughter to treat her. At the suggestion of Shen Min, the standing deputy director of rare disease medicine in the hospital, Yaya was admitted to the ward and prepared for a systematic examination. "The ward environment of one room with one patient is spacious, and the doctors and nurses are very patient. Our family is full of confidence in the follow-up treatment," said Ms. Ai.
"Patients with rare diseases often need multi-disciplinary diagnosis and treatment. Previously, patients may need multi-disciplinary referral, and the use of rare disease wards can make diagnosis and treatment more convenient for patients." Xu Jin, deputy chief physician of rare disease medicine in Peking Union Medical College Hospital, said that at present, the ward has 23 beds in total. In addition to the full-time physicians in the department, there are also physician management wards from clinical departments such as internal medicine, neurology, endocrinology, dermatology, etc. At the same time, experts in the MDT (multidisciplinary treatment) team of Peking Union Medical College for Rare Diseases also participate in the diagnosis and treatment of patients.
In addition, Peking Union Medical College Hospital has established an innovation and development research institute for rare disease diagnosis and treatment, which will promote the innovative development of "production, teaching, research and application" in accordance with clinical needs. By building a product innovation and transformation base, an integrated diagnosis and treatment service platform, building a joint laboratory and data support platform, building a new system and exploring new models in the field of rare disease diagnosis, treatment and research, Solve major scientific problems in the field of rare diseases. (Wang Yaoqi, Chai Rong)
