February 29th is World Rare and Intractable Disease Day.
An event is being held to deepen understanding of "rare and incurable diseases."
Rare and incurable diseases are diseases for which the number of patients is particularly small among intractable diseases for which no treatment has been established, and "World Rare and Intractable Disease Day" started in Europe in 2008 and is held in more than 70 locations in Japan this year. is being held.
At the venue in Chuo Ward, Tokyo, 41 organizations set up booths and held exhibits introducing the disease and their activities.
At the booth of the patient association for Alagille syndrome, a disease caused by a chromosomal abnormality that causes liver and heart damage, cookies and bags with logos of the disease made by patients were on hand to raise awareness about the disease, which is said to affect 1 in 100,000 people. are arranged.
According to the Ministry of Health, Labor and Welfare, there are approximately 1 million patients in Japan with designated intractable diseases, but we do not know how many types of rare and incurable diseases there are or the total number of patients.
It has been pointed out that because the number of patients is small and the disease mechanism is complex, research into therapeutic drugs is slow and it takes time to make a diagnosis, placing a heavy burden on patients and their families.
Yukiko Nishimura, executive director of RDD JAPAN, which supports patients and their families, said, ``The number of patients with each disease is small, but when you add them together, there are a large number of patients.One day, you might suddenly become ill yourself.'' I think that if people learn more about diseases, it will lead to the establishment of medicines and treatments, which will lead to a society where everyone can live in a better place.''