The 2025 China Rare Disease Summit Forum will be held in Wuhan from September 19 to 21
Recently, the preparations for the 2025 China Rare Disease Summit Forum were officially launched. This highly anticipated industry event is scheduled to be held at the Wuhan International Expo Center from September 19 to 21. As a top academic conference in the field of rare diseases in China, this forum will bring together top global experts, scholars, corporate representatives and patient organizations to discuss core issues such as rare diseases diagnosis and treatment, drug research and development, and policy support.
According to the organizing committee, the theme of this forum is "Innovation and Collaboration: Promoting the Globalization of Rare Disease Prevention and Control", aiming to improve the level of rare disease prevention and control in China through multidisciplinary cross-disciplinary and international cooperation, and benefit more patients. Here are the details of the forum:
| project | content |
|---|---|
| Forum Name | 2025 China Rare Disease Summit Forum |
| Hosting time | September 19-21, 2025 |
| Organizing location | Wuhan International Expo Center |
| theme | Innovation and collaboration: Promoting the globalization process of rare diseases |
| Estimated number of participants | 2000+ (including online participants) |
| Organizer | China Rare Disease Alliance, National Health Commission |
Forum highlights
1.Collection of international experts: Authoritative experts in the field of rare diseases from the United States, Europe, Japan and other places will share the latest research results, including cutting-edge technologies such as gene therapy and orphan drug development.
2.Patient participation mechanism innovation: For the first time, the "Voice of Patients" special session was established, inviting patients with rare diseases and representatives of family members to participate in policy discussions, and promote the construction of a "patient-centered" medical system.
3.Industrial Cooperation Platform: The forum will release the "China Rare Disease Drug Research and Development White Paper (2025)" and promote the signing of at least 10 industry-university-research cooperation projects.
4.Policy Interpretation: The relevant person in charge of the National Health Insurance Administration will explain in detail the latest policies on drug protection for rare diseases, including the dynamic adjustment mechanism of the medical insurance catalog and the progress of the establishment of special funds.
Review of recent hot topics in rare diseases (online data in the past 10 days)
| Hot events | Attention Index | Main discussion direction |
|---|---|---|
| The first SMA gene therapy drug has been approved in China | 987,000 | Treatment costs and accessibility |
| "Guidelines for Diagnosis and Treatment of Rare Diseases (2025 Edition)" Soliciting opinions | 762,000 | New types of diseases and diagnostic criteria |
| The 10th anniversary of the "Ice Bucket Challenge" | 654,000 | ALS research progress, social attention |
| A star donated money to children with rare diseases has caused heated discussion | 1.205 million | Public welfare model, social influence |
Participation information
This forum adopts a mixed model of "online + offline", and professional audiences can register through the official website (www.raredisease2025.org). Early Bird Discount will be closed on July 31, and student participants can apply for bursary grants. The organizing committee specially reminds that due to the special needs of patients with rare diseases, the venue will be equipped with barrier-free facilities and professional medical support teams.
Social significance
According to the latest statistics, the total number of rare diseases in China exceeds 20 million, but less than 40% of them have obtained clear diagnosis. The convening of this forum will not only promote breakthroughs in diagnosis and treatment technology, but also promote the establishment of a full-chain service system covering screening, diagnosis, treatment and protection. As a major center of China's biopharmaceutical industry, Wuhan hosted the summit forum this time also demonstrated its strategic position in the field of medical innovation.
Professor Li Ming, Secretary-General of the Forum, said: "We look forward to the transformation of rare diseases from 'medical problems' to 'preventable and curable' conventional diseases, and ultimately achieve the goal of 'no one can be left behind'." More detailed agendas and guest lists will be announced in mid-August.
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