Limited awareness
Across diagnosis, care, research, development, payment, policy and social support, the complexity of rare disease and the realities of patients remain poorly understood.
Rare-disease education · Patient co-creation · Decision support
What can one pea do?
Make the rare visible. Connect isolated worlds. Turn patient experience into knowledge and community power into change.
Wonder Sir is a leading China-based rare-disease education and decision-support platform grounded in an understanding of the patient journey. Since 2016, we have worked with patient communities, clinical experts and public-interest partners to turn complex medical knowledge and lived experience into support that people can understand, share and use.
WHY WE EXIST
The challenge of rarity
Rare does not only mean small in number. It often means remaining unseen for too long.
System inefficiency
When the real problem is unclear, different actors cannot respond or hand off effectively, creating compounding inefficiency.
Irreversible loss
Families spend limited time and resources navigating long waits, repeated trial and error, and gaps in support—often at the cost of irreplaceable opportunities.
WHO MAKES IT POSSIBLE
A network of co-creation
Professionals initiate and coordinate. Patients and families become long-term co-creators. Volunteers and project collaborators sustain action, while clinical experts protect medical boundaries.
Portrait
01
Yiwei Chen
Founder / Executive Lead
PhD in Biology, Heidelberg University; former gene-therapy R&D scientist
Combines genetics expertise and ecosystem-building to turn real patient needs into sustainable education, community and collaborative action.
Portrait
02
Zhu Zhu
Editor-in-Chief / Patient Co-creation Lead
Uses the patient perspective and narrative editing to translate lived experience into content that is dignified, humane, understandable and open to co-creation.
Initiating & coordinating core
Sets direction, coordinates the organisation, safeguards key decisions and builds external connections.
Core co-creation partners
Long-term contributors to Wonder Sir content and projects, many of whom are patients or family members themselves.
Collaboration & volunteer network
Provides sustained support through projects, defined phases or volunteer participation.
Clinical expert review network
Provides medical review, professional assurance and boundary support.
Core leaders hold the direction. Long-term partners co-create. The network sustains action. Clinical experts protect trust.
A DECADE OF ACTION
Our journey
From education and training to community insight, our work has always grown around real patient needs.
- 2016
Planting one seed
We began with genetics and rare-disease education, answering the questions families were actually asking.
- 2017–2018
Sprouting connections
We connected communities and experts, building a network for co-created content and public engagement.
- 2019–2020
Taking root
We expanded our knowledge system, programs and community capability-building.
- 2021–2022
Co-creation and influence
We contributed reports, courses and public conversations, widening the circle of impact.
- 2023–2024
Professional and global
We deepened professional support and joined more international and sector dialogue.
- 2025–2026
An ecosystem for the future
We are co-building a more connected and sustainable rare-disease support ecosystem.
WHAT HAS GROWN
Capabilities that create impact
Education changes awareness. Insight reveals needs. Collaboration moves action. International exchange amplifies impact.
Education
We translate complex genetics, rare-disease and patient-journey questions into knowledge people can understand, share and use.
Selected workBorn Extraordinary education series; Little Peas Under the Rainbow public courses.
Data and insight
We identify real problems across disease information, lived experience and community ecosystems, creating insight for decisions.
Selected workChina Rare Disease Comprehensive Report (2021); 2026 China Rare Disease Patient Community Landscape.
Ecosystem collaboration
We connect patient communities, clinicians, NGOs, researchers, companies, media and public resources around shared action.
Selected workSearching for Rare Medical Heroes; One-in-Ten-Thousand Encounter public video exhibition.
An international bridge
We translate the experience, needs, data and action of Chinese patient communities for global partners.
Selected workContributions to WODC, APARDO, DIA and other international forums.
Content impact
- 300+
- Original explainers
- 10M+
- Public reach
Community connection
- 89
- Co-creating patient groups
- 207
- Communities surveyed
Professional support
- 49
- Hospitals
- 101
- Clinical experts & teams
Knowledge & recognition
- 2
- Popular-science books
- 1
- Academic paper
- Multiple
- Industry awards
Data as of June 2026. Figures will continue to be updated.
GROW IMPACT TOGETHER
Let’s act together
Work 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.
Ways to collaborate
Education and communication
Co-create disease education, genetics learning, patient materials, courses and public communication.
Community capacity and participation
Support community growth through capability-building, experience co-creation, participation and resource mapping.
Insight and research
Study patient journeys, community ecosystems and real needs to create analysis and decision-ready insight.
Ecosystem and global exchange
Connect patients, clinicians, researchers, NGOs, industry, media and international partners across boundaries.
Partnership email
wonder-for-all@wondersir.orgFor partnership enquiries, project discussions and institutional contact
Follow our work
Open to every partner and friend who cares about rare disease
WeChat Official Account
WeChat Channels
