From May 23 to 25, 2024, the Global Rare Disease Research Forum and the 2nd China Rare Disease Research and Translational Medicine Conference took place at the Shanghai Sanjiagang Greenland International Conference Center. This prestigious event attracted over 150 distinguished speakers from more than 20 countries and regions, with over 1,600 registered participants, marking it as a significant international academic exchange platform for the rare disease community.

 

The opening ceremony, held on May 23, featured prominent experts and scholars from top universities, hospitals, research institutes, government agencies, and foundations, who shared their insights on rare disease diagnosis, cutting-edge research, and the challenges of clinical translation and international cooperation. These discussions were geared toward fostering a deeper global collaboration to address the pressing needs of rare disease research and treatment.

 

Keynote Addresses and Highlights

 

David Pearce, Chair of the International Rare Disease Research Consortium (IRDiRC) and head of innovation and research at Sanford Health, delivered a powerful speech during the opening ceremony, emphasizing the urgency of advancing rare disease diagnostics globally. He expressed hope that this conference would accelerate patient diagnoses and foster stronger international cooperation. His message, “No rare disease patient should be left behind,” resonated deeply throughout the event.

 

Harvey F. Lodish, Professor of Biology and Bioengineering at MIT, shared his journey of creating successful biotech companies aimed at treating rare diseases. In his keynote, “Using New Technologies and Building Successful Biotech Companies to Treat Rare Diseases,” Lodish highlighted the importance of innovative thinking in diagnostics and advocated for the establishment of policies, such as orphan drug legislation, to incentivize rare disease drug development. Drawing on his experience founding Genzyme, he offered insights into how academia can partner with biotech to bring groundbreaking therapies to market.

 

Huang Rufang, co-founder and secretary-general of the Ruiou Public Welfare Foundation and founder of the Corde Rare Disease Center, delivered the third keynote titled “Driving Innovation in Rare Disease Research and Translational Medicine.” Huang stressed that while more than 7,000 rare diseases have been identified, fewer than 700 have effective treatments. He called for increased global cooperation and resource sharing to accelerate research and ensure that patients receive timely and effective treatments.

 

Sails of Hope’s Role in the Event

 

As an organization committed to raising awareness and support for rare disease patients, Sails of Hope played an essential role in the success of this global event. We worked closely with the Ruiou Public Welfare Foundation and Corde Rare Disease Center to assist with the preparation and organization of behind-the-scenes materials. Our team contributed significantly to the translation of critical research documents, presentations, and speeches, helping ensure seamless communication between international attendees.

 

Our involvement in this forum reflects Sails of Hope’s broader mission to support rare disease research, foster collaboration across borders, and bring hope to patients through advocacy and fundraising initiatives. Participating in such a significant global event was both an honor and a reaffirmation of our commitment to making a meaningful impact in the rare disease field.

 

A Global Movement for Change

 

The forum provided an invaluable platform for experts to exchange the latest research breakthroughs, explore innovative therapies like gene and cell treatments, and discuss clinical trials and international collaborations. Over 20 sessions covered topics ranging from basic research to drug development, showcasing China’s growing contributions to the global rare disease research landscape.

 

More importantly, the event emphasized the importance of compassion and understanding for rare disease patients, promoting social inclusion and a deeper commitment to creating a more equitable healthcare landscape.

 

As the conference drew to a close, the sense of unity and purpose among participants was palpable. At Sails of Hope, we are incredibly proud to have contributed to this event and remain steadfast in our dedication to supporting rare disease research, fostering global cooperation, and providing hope to patients and their families.

 

Stay tuned for more updates on our initiatives and future collaborations as we continue our mission to improve the lives of rare disease patients around the world!