9th China Rare Disease Summit Officially Opens Registration!

——China Rare Disease Summit Forum——

Launched in 2012, the China Rare Disease Summit is the largest and most professional comprehensive rare disease forum in China. It serves as a showcase platform for the latest diagnostic and therapeutic products and services, as well as a dialogue platform for the most recent rare disease policies both domestically and internationally.

Held annually, the forum has successfully convened eight sessions to date. It aims to strengthen communication and collaboration among various stakeholders, including patient communities, medical experts, pharmaceutical companies, sequencing institutions, government policy-making bodies, and patient organizations. By facilitating the presentation and exchange of authoritative insights from industry experts, the forum has gradually become a premier window for the world to understand China and for China to engage with the global community, while also playing a significant role in policy advocacy, multi-party collaboration, and international exchange.

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——The 9th China Rare Disease Summit Forum——

The 9th China Rare Disease Summit will be grandly held on September 12–13, 2020. Co-hosted by the Chinese Organization for Rare Disorders (CORD) and West China Hospital of Sichuan University, the conference will bring together experts and scholars, clinicians, pharmaceutical companies, sequencing institutions, government agencies, rare disease organizations, patient families, and media representatives from both domestic and international arenas. With thousands of attendees expected, the event will adopt a hybrid online-offline format: participants will register and attend online, while guest speakers will gather in person at the main venue in Chengdu. The summit will feature 15 thematic sessions:

1. Exploration of Medical Security for Rare Diseases

2. Optimal Pathway for Market Access of Overseas Orphan Drugs in China

3. Construction of Clinical Service Systems for Rare Diseases — Special Session at West China Hospital, Sichuan University

4. Clinical Research and Diagnosis & Treatment Symposium on Fabry Disease

5. The Impact of the Pandemic on China's Healthcare Service System

6. International Session on Patient-Centered Therapy Development and Translational Medicine (with English Simultaneous Interpretation)

7. Personalized Healthcare for Rare Diseases (PHC)

8. New Advances in Gene Therapy Research

9. Experience Sharing and Work Plans by Regional Rare Disease Chapters

10. Commercial Insurance and Innovative Payment Solutions

11. Confronting the Epidemic: Patient Organizations in Action (English Simultaneous Interpretation)

12. Clinical Practice and Experience in the Diagnosis and Treatment of Rare Diseases (Taipei Veterans General Hospital Special Session)

13. Internet, Big Data, and Artificial Intelligence Empowering the Diagnosis and Treatment of Rare Diseases

14. Precision Medicine for Rare Diseases

15. Exploration and Reflections on the Participation of Chinese Rare Disease Patient Organizations in Clinical Research

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Register to attend the conference and enter the prize draw,Surprise Gifts Await You!

* AttendeesVia the official conference websiteView Live Replay, and canDownloadAuthorized for sharingExpert Presentation Slides。

Speaker Lineup (Continuously Updated):

Click the image or link to view the speaker's detailed profile:

http://www.raredisease.cn/follow!detail?id=8a9d47546bacea9001744a6f11b60a39

Conference Agenda:

——CORD Center for Rare Diseases——

The Center for Rare Diseases (CORD), formerly known as the Rare Disease Development Center, was established in 2013 by Mr. Huang Rufang. As a non-profit organization dedicated to the field of rare diseases, it has been operating in China for seven years and is currently the largest, most influential, most internationally oriented, and most professionally run social organization focused on rare diseases in the country. The Center is committed to enhancing communication and collaboration among stakeholders—including patient communities, rare disease organizations, medical institutions, pharmaceutical companies, and government agencies—raising public awareness of rare diseases, improving patient access to orphan drugs, advancing scientific research and translational medicine in rare diseases, fostering international exchange and cooperation, and promoting the development of the rare disease sector in China.

As a rare disease patient himself, founder Huang Rufang began advocating for public awareness and science education on rare diseases in 2008, successfully introducing International Rare Disease Day to China. After a decade of advocacy, rare diseases in China have gone from being “little known” to “widely recognized.” He is a pioneer and practitioner in the field of rare diseases in China and is widely acknowledged as a leading figure in the domestic rare disease community.

——West China Hospital, Sichuan University——

As a national-level center for the diagnosis and treatment of complex, critical, and severe conditions in western China, West China Hospital of Sichuan University established its Rare Disease Diagnosis and Treatment Center in 2016. Professor Li Weimin, Dean of West China School of Medicine/West China Hospital of Sichuan University, serves concurrently as the Director of the Center. The Center conducts diagnosis and treatment of rare diseases through centralized patient care, consolidated expert resources, and integrated research platforms.

Currently, the center brings together hundreds of experts from 37 clinical and medical technology departments within the hospital, along with 15 supporting platforms, and has established a collaborative partnership for rare disease research with the University of Birmingham in the United Kingdom. Initiatives such as the WeChat service platform, specialized rare disease outpatient clinics, multidisciplinary joint clinics, and a rare disease scientific research database constitute integral components of West China Hospital’s overall rare disease framework. How to construct a clinical service system for rare diseases? This is a question that West China Hospital is actively exploring and continually reflecting upon, and it is also an issue that all hospitals specializing in rare diseases need to constantly improve and enhance.

Registration for the conference is now open. Scan the QR code below to sign up, and stand a chance to receive surprise gifts!

Scan the QR code to register