An effort was made online on the 28th to get people to know about intractable diseases and rare diseases for which the number of patients is small and the treatment method has not been established.
This was done in time for "Rare and Intractable Diseases Day in the World".
In this, patients and their families talked about their experiences, and Gatelier Laurin, who suffers from a malignant brain tumor called neurocyst, said, "When the disease was discovered nearly six years ago, the child was still young and did not know how long he could live. I thought it would be very hard for my family if I were gone. Now I can share the anxieties that I can't talk about anywhere else. I want to have a remedy and I have to have knowledge as a patient. I don't think it should be done. "
In addition, Kohei Watabe, a high school student who is a patient with Ulrich-type congenital muscular dystrophy, introduced the patient group that he is the representative of, and said, "If you have such a disease, you will have it by yourself, but it is the first time you share it with someone. I think we can face each other. To that end, it is important for us to be willing to communicate with each other, and we would like to expand our activities with the idea that it will lead to a cure if the patients themselves move. "