Takeda China Successfully Hosts Its First Rare Disease Patient Organization Summit

Chengdu, September 11, 2020 /PRNewswire/ -- Today, the inaugural Rare Disease Patient Exchange Summit, themed "Rare Lives, Witnessing Takeda's Heart" (hereinafter referred to as the "Summit") and hosted by Takeda China, was successfully held in Chengdu. Numerous leading domestic rare disease patient organizations jointly participated in this event, including the Center for Rare Diseases (CORD), Beijing Pain Challenge Public Welfare Foundation, Beijing Hemophilia Home Rare Disease Care Center, China Lymphoma Patient Network, Love in Extension Inflammatory Bowel Disease Foundation, Seven-Color Violet Rare Disease Alliance, Chinese Gaucher Disease Association, Chinese Fabry Disease Patient Association, and Juezhujia Narcolepsy Patient Organization. Participants engaged in discussions on the development plans for rare disease patient organizations in China.

At this summit, Takeda China officially announced its support for the initiative launched by the Wuxi Lingshan Charity FoundationChina Rare Disease Patient Organization Empowerment Project(hereinafter referred to as the “Project”), draws on the proven successes of mature patient organizations abroad and, in light of the distinct characteristics of Chinese patient organizations at different stages of development, customizes a growth roadmap to help them precisely position themselves and clarify their future direction and objectives. Another key focus of the empowerment initiative is to build an enabling system on this foundation, precisely cultivating the critical capabilities urgently needed by patient organizations, enhancing their professionalism and maturity in talent development, resource mobilization, policy advocacy, and organizational operations, thereby advancing the cause of rare diseases in China.

Due to the unique nature of rare diseases, patient organizations are more cohesive compared to those for other conditions, demonstrating a greater willingness to actively advocate for the patient community and playing a particularly important role in advancing the cause of rare diseases. However, in China, most patient organizations were established after 2000 and remain in the early stages of development, facing numerous challenges related to core capacities, including a shortage of professional talent, limited effectiveness, simplistic and fragmented organizational structures, and constrained access to resources. According to survey findings from the Chinese Alliance for Rare Diseases, more than two-thirds of staff members in rare disease patient organizations across China are patients or their family members, resulting in limited professional expertise and a lack of long-term strategic planning for organizational development.

In response to the current situation, the “Patient Organization Growth Map” launched by the China Rare Disease Patient Organization Empowerment Project will conduct in-depth investigations and analyses of Chinese patient organizations. This initiative aims to help these organizations identify their current stage of development, uncover the characteristics associated with the four distinct phases—loose formation, incubation, growth, and maturity—and precisely clarify the organizational development needs and key priorities at each stage. This lays the foundation for accurately cultivating the core competencies required by patient organizations, thereby enhancing their maturity and professionalism.

While ensuring precise positioning, the empowerment initiative also introduces a comprehensive framework. Based on the growth map of patient organizations, this framework provides a clear-step, goal-oriented empowerment and training system tailored to the specific diseases addressed, organizational size, and development stage of each patient organization. It precisely cultivates the key competencies required by patient organizations at each stage. Starting with psychological counseling and skills training, the framework strengthens the professional capabilities of patient organization staff through systematic courses and diverse scenario-based practices. This deepens patient organizations’ understanding of the significance and value of their work, enabling them to successfully transition in their functions and roles.

During the afternoon discussion session of the summit, Takeda engaged in in-depth discussions with various patient organizations and partners in the rare disease field on several key industry topics, including strengthening collaboration in drug innovation and R&D with rare disease patients, patient participation in China’s healthcare security for rare diseases, the influence of public advocacy in driving rare disease policies, and shared decision-making between physicians and patients in rare disease treatment. Representatives from rare disease patient organizations attending the event stated that Takeda has always maintained close cooperation with patient organizations. They expressed confidence that through this China Rare Disease Patient Empowerment Project, both parties will better achieve mutual growth and progress, jointly enhance the maturity and professionalism of rare disease patient organizations in China, and help these organizations play an increasingly important role in the development of the rare disease cause in China.

Mr. Shan Guohong, President of Takeda China, stated, “As a global leader in the field of rare diseases, Takeda has always adhered to its core philosophy of ‘patient-centricity.’ Over the years, we have worked closely with patient organizations to provide continuous care and assistance to patients with rare diseases. Through the Takeda China Rare Disease Patient Organization Empowerment Program, we will fully leverage Takeda’s accumulated advantages and experience in the rare disease sector to help rare disease patient organizations further align with international standards in terms of organizational structure and professionalism. This initiative aims to unlock the significant potential of these organizations, empowering them to achieve independent, healthy, and sustainable development.”