In this video, Professor Jean-Marc Burgunder, head of the Huntington’s Disease (HD) centre in Bern Switzerland, and Xi Cao, President of the Chinese HD Association talk about the benefits of collaboration.
The number of Chinese people with HD is thought to be somewhere between 10,000 and 30,000.
The Chinese HD Network (CHDN) was established in 2011 with support from Professor Burgunder and the European HD Network (EHDN). Like EHDN in Europe, the CHDN is made up of HD specialists – clinicians and researchers.
In 2016, Xi Cao, whose mother was affected by HD, established the first association for patients and their families. She talks about the impact Professor Burgunder made, and continues to make, in China. Apart from helping educate doctors about this rare disease he brought a more patient-centric approach, which changed the way they operate.
Professor Burgunder talks about the synergy between the two organisations and how important it is to have that bridge between the patient association and the clinical network, so that there is a better understanding of what HD families go through.
He also talks about the importance of working globally, to help one another. Despite differences in culture and healthcare structure, the suffering is always similar.
Countries can learn from each other. The benefits go both ways, and important friendships are made along the way.
Read more about the great work being done by the Chinese HD Association and the Chinese HD Network in these presentations made at the EHDN 2024 meeting in Strasbourg, by Xi Cao (President of CHDA) and Luyang Feng (CHDN Coordinator).
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