Thank you for visiting the DRPLA Family Network (DFN).
DRPLA (Dentatorubral-Pallidoluysian Atrophy) is a rare, devastating disease, with only a few thousand known patients worldwide. For the families living with DRPLA, it can feel like one of the most difficult diseases to face.
There are several reasons for this:
• It is hereditary, which means that more than one member of the same family may be affected.
• It is progressive, and the disease continues to worsen little by little over time.
• It can affect not only movement, but also thinking, emotions, and personality.
DRPLA can make it incredibly difficult for loved ones to simply share their remaining time together as a family.
My own family is no exception. My daughter, Kuri, inherited DRPLA from her father, Chiaki. Even after they were told that they had limited time left, we struggled with the changes caused by the disease, including difficulties with emotional control, hurtful words, and sometimes violence.
Other families face similar challenges. In some families, several brothers and sisters develop the disease around the same time, placing a tremendous burden on the entire family. Many families are doing their best to live with the weight of this disease.
Another important characteristic of DRPLA is that many of the known patients are Japanese. Yet even in Japan, DRPLA is still not well known among doctors and other healthcare professionals, and the actual experiences and needs of patients and their families are not fully understood.
At DFN, we conduct surveys and studies among patients and families, collect information and data, and share what we learn. Through these efforts, we hope to deepen understanding of DRPLA and help advance research and medical care.
If you are a healthcare professional interested in hearing directly from patients and families, or if you would like to explore opportunities to work together, please feel free to contact us.
If you are worried that you or someone in your family may have DRPLA, please contact us as well. We may be able to connect you with a specialist in your area.
But there is also hope.
In recent years, we have begun to see promising developments in potential treatments for DRPLA. We want to help move this progress forward and bring new possibilities to patients and families around the world.
DFN works closely with CureDRPLA, a nonprofit organization established in the United States in 2019. Through the work of CureDRPLA and its partners, DRPLA research has made important progress, including natural history studies and the development of patient registries.
Together with CureDRPLA, which is helping lead global efforts in DRPLA research and treatment development, we will continue working toward a future where DRPLA can be treated.
Our greatest hope is that effective treatments for DRPLA will be established and reach patients around the world as soon as possible.
We sincerely ask for your understanding, support, and partnership.
Junko Shiozawa
Representative
DRPLA Family Network
