VHL Fellowship Event Successfully Concluded

The first fellowship event specifically for von Hippel-Lindau (VHL) syndrome patients was held on May 19th at the Taipei Bioinnovation Park, with eight VHL patient families and a total of ten participants. The event began with a sharing session by the founder of the TFRD, Mrs. Serena Wu, who talked about her journey in advocating for., for patients’ rights. She mentioned that although a beneficial drug for angioma growth control exists, it is not yet available in Taiwan. She encouraged establishing a fellowship group to advocate for patients' rights alongside the foundation.
 
Following this, Dr. Hsieh Hsiu-Ying from Taipei Tzu Chi Hospital led an educational session on the disease and its treatment, explaining the disease's causes, clinical symptoms, diagnostic criteria, and characteristics. Dr. Hsieh emphasized the importance of regular check-ups and monitor tumor conditions, noting the difficulty of coordinating examinations due to the systemic nature of VHL's vascular tumors. Dr. Hsieh announced that efforts are underway to establish integrated outpatient services, which would help reduce the need for multiple hospital visits for patients.         

Dr. Hsieh also shared information on relevant international treatment methods abroad. One particular treatment is the drug "Belzutifan," a drug that can inhibit vascular proliferation and tumor growth without surgery and has been shown to effectively suppress vascular proliferation. With studies indicating positive responses for multiple tumors associated with VHL. This news energized the participants, who hope that this medication could soon be available in Taiwan to improve the quality of life and health of patients who are currently undergoing frequent surgical treatments.
 
During the event, Dr. Tsai Li-Ping provided a medical lecture, and a survey was distributed to gather information about the current status of VHL patients in Taiwan. With the support of Dr. Tsai, patients shared their treatment experiences and decided to form a fellowship group, electing You Wen-Han as President and Hong Zheng-Nong Zheng-Nongas Vice President. They plan to create a Facebook fan page and LINE group for further communication and experience sharing.
 
The event was supported by EXCELSIOR BIOPHARMA INC.,, we would like to thank them for providing the venue and assistance during the event. Additionally, we appreciate founder Mrs. Serena Wu for accompanying the patients throughout the day With her encouragement and support, everyone looksforward to the next gathering , hoping to invite even more patients to participate.

Translator: Jia-Yi Huang
Reviewer: Joy Yin