Making the rare visible, connecting isolated communities; turning patient experience into knowledge, and community power into change.
Wonder Sir is one of China's leading patient journey–driven platforms for rare disease education and insights. Since 2016, we have continuously co-created with patient communities, clinical experts, and nonprofit partners, translating complex medical knowledge and lived patient experience into knowledge and support that are understandable, shareable, and usable.
Rarity is not only about small numbers. It is also about remaining unseen for too long.
Across diagnosis and treatment, care, research, drug development, reimbursement, policy, and social support, there is still limited understanding of the complexity of rare diseases and the lived realities of patients and families.
When real problems remain unclear, each part of the system struggles to respond effectively or hand off to the next, creating inefficiencies that reinforce one another.
As a result, patient families spend limited time and resources in long waits, repeated trial and error, and persistent gaps in support, while losing irreplaceable windows of opportunity in life.
Initiated and coordinated by professionals, sustained by patients and families as long-term co-creation partners, supported by volunteers and collaborators, and safeguarded by clinical experts.
Founder / Executive Lead
Dr. rer. nat. in Biology from Heidelberg University; former gene therapy R&D scientist.
With expertise in genetics and ecosystem building, she turns patients' real needs into sustainable action in education, community building, and cross-sector collaboration.
Editor-in-Chief / Patient Co-Creation Lead
With lived patient perspective and narrative editorial expertise, she translates real patient experience into content that is dignified, empathetic, understandable, and open to co-creation.
Sets direction, coordinates the organisation, safeguards key decisions and builds external connections.
Long-term contributors to Wonder Sir content and projects, many of whom are patients or family members themselves.
Provides sustained support through projects, defined phases or volunteer participation.
Provides medical review, professional assurance and boundary support.
From education and training to patient community insights, Wonder Sir's work has always grown from the real needs of patients and families.
2016
2017
2018
2019
2020
2021
2022
2023
2024
2025
2026
Education changes understanding; insights reveal real needs;
ecosystem collaboration drives action; global bridges amplify impact.
We translate complex issues in genetics, rare diseases, and the patient journey into knowledge that can be understood by patient families, the public, and professional partners.
Selected workRare Diseases: Born to Challenge — Heartwarming Science Series; "Wonder Under the Rainbow", Training Course on Rare Disease Education and Genetic Counseling
We identify real needs from disease information, patient experience, community action, and ecosystem resources, generating patient and community insights that can inform decision-making.
Selected work2021 Landscape Report of Rare Disease in China; 2026 Comprehensive Landscape of Rare Disease Patient Communities in China
We connect patient communities, clinical experts, nonprofit organizations, research institutions, companies, media, and public resources to enable collaboration around real-world needs.
Selected work"In Search of Rare Disease Medical Heroes", Public Advocacy Campaign; "Meet You in 1/10,000", Public Education Video & Art Exhibition
We translate the experience, needs, data, and action insights of China's rare disease patient communities into knowledge that international partners can understand and use.
Selected workInternational conference presentations at WODC｜APARDO｜DIA
Data as of June 2026.
Partner with Wonder Sir to turn patient experience into knowledge and community power into change.
We welcome companies, foundations, healthcare and research institutions, patient communities, media, educators and international partners to collaborate on rare-disease education, community support, data insight and ecosystem action.
Co-create disease education, genetics education, patient education materials, courses, and public communication content.
Support patient community growth through capacity building, experience co-creation, patient engagement, and resource mapping.
Conduct research, analysis, and insight reports based on patient journeys, community ecosystems, and real-world needs.
Connect patients, clinicians, researchers, NGOs, companies, media, and international partners to enable cross-sector collaboration.
For partnership inquiries, project communication, and institutional contact.
Open to all partners and friends who care about rare diseases.
