Experts call for greater awareness of severe skin disease

The first generalized pustular psoriasis (GPP) physician-patient exchange conference was held in Shanghai on the weekend to boost public awareness of the skin disease, promote patient-physician exchanges and improve the diagnosis and treatment of GPP patients in China.

Domestic experts in dermatology, heads of patient communities, patient representatives, their family members and advocates gathered to discuss topics related to the needs of patients, disease diagnosis and treatment, healthcare insurance policies, and collaboration with patient organizations.

The meeting was hosted by the Chinese Organization for Rare Disorders (CORD), co-organized by the Psoriasis Patients Mutual Aid Network, and supported by German pharmaceutical company Boehringer Ingelheim.

GPP is a rare and severe skin disease often characterized by acute onset. Besides reddening of the skin and the emergence of multiple pustules all over the body, patients would 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, who added that the public and even the patients themselves do not have sufficient awareness of the disease. Presently, there are no approved therapies for such patients in China.

In June, with the support of Boehringer Ingelheim, CORD launched China's first GPP patient organization incubation project, which has created a patient service platform on WeChat to provide disease knowledge for GPP patients and offer them channels to seek help and support.

"The GPP patient organization will strive to gather patients from all over the country, while calling on people across society to help patients gain greater access to healthcare," said Huang Rufang, founder of CORD.

Medical experts also called for more rare diseases to be included in the country's rare disease list so that drug accessibility and affordability will be gradually improved, thus improving medical treatment levels and quality of life for patients.

In late October, Boehringer Ingelheim submitted a new drug application for a first-in-class innovative therapy to treat patients with GPP.

Pavol Dobrocky, general manager of human pharma at Boehringer Ingelheim China, said that the company has been committed to advancing the development of innovative therapies and pioneering innovation in disease fields where treatments have yet to be approved.

"We're also committed to playing a more important role in the full-cycle health service ecosystem in China. We'll work with all partners to provide care for GPP patients and other specific patient populations, and help improve the rare disease healthcare security system," he said.