China’s first GPP community set up

The country's first patient community of generalized pustular psoriasis (GPP), a rare and severe skin disease, was established in Shanghai on Saturday ahead of International Rare Disease Day, which falls on Feb 28.

The patient community, which was initiated by the Chinese Organization for Rare Disorders (CORD) and the Psoriasis Patients Mutual Aid Network and supported by German pharmaceutical company Boehringer Ingelheim, will focus on building a service platform that integrates emotional care, disease popularization, doctor-patient communication, diagnosis and treatment support, and improvement of the security system for the patients.

Comprising more than 100 members, the patient community said it will join hands with the government, hospitals, experts, and pharmaceutical companies to help more GPP patients receive standardized treatment  and promote drug availability. There are no approved therapies for such patients in China so far.

GPP is a rare skin disease often characterized by acute onset. Besides reddening of the skin and the emergence of multiple pustules all over the body, patients also develop symptoms such as fever, chills, and painful skin lesions. In severe cases, GPP can lead to life-threatening organ failures and complications.

About one to two out of every 100,000 people in China suffer from GPP, according to experts.

"There has been great progress in GPP medical research in recent years. In addition to the innovation of treatment plans, we still need more efforts from all parties to promote disease diagnosis and social security so that patients can have an improved quality of life," said Xu Jinhua, director of the dermatology department at Huashan Hospital Affiliated with Fudan University.

"GPP is a disease field with significant unmet clinical needs. We're not only committed to making breakthroughs in disease treatment plans, but will also explore full-course disease management, including artificial intelligence-supported diagnosis to strive to build a better patient-centric ecosystem," said Pavol Dobrocky, general manager of human pharma at Boehringer Ingelheim China.