Since DRPLA is more prevalent in Japan, CureDRPLA has made it a priority to build connections with the scientific and clinical community there. Junko Shiozawa, Advisory Board Member, has played a key role in building a community of Japanese individuals affected by DRPLA and their families.
On July 22, Dr Silvia Prades welcomed Dr Jiro Ezaki to the Ataxia UK office in London. Dr Ezaki is a Deputy Director at Japan’s Ministry of Health, Labor, and Welfare, and has been a key contact for the CureDRPLA team. He has connected us with scientists and clinicians in Japan, helping to strengthen our international collaborations.
Dr Prades presented a summary of our work to date and key achievements, with a focus on projects that could be implemented in Japan. As Japanese patient organisations are generally small, Dr Ezaki was interested in learning how the Japanese government could better support them. To offer further examples, Dr Emily Cutting, Research Manager at Ataxia UK, spoke about Ataxia UK’s work and the different ways patient organisations can operate and make an impact.
Dr Ezaki gave an overview of policies and rare disease efforts in Japan. In Japan, there are records of all individuals diagnosed with intractable diseases, including DRPLA. This allows for tracking the number of people affected by DRPLA over time and understanding the severity of their condition. Having a more accurate and up-to-date estimate of the number of people living with DRPLA in Japan would be highly valuable.
We are grateful to Dr Ezaki for taking the time to meet with members of our team and for engaging in thoughtful discussions about how we can strengthen our relationships with the Japanese community. These conversations were not only inspiring but also vital as we look to expand our efforts and launch new initiatives in Japan. Collaboration at this level brings us one step closer to a more connected, global approach to tackling DRPLA.