A symposium was held to deepen understanding of rare and incurable diseases, which have a particularly small number of patients and can leave families isolated.
"Rare and intractable diseases" are diseases for which the number of patients is particularly small among "intractable diseases" for which no cure has yet been established, and the government does not fully understand the actual situation, such as the issues faced by patients and their families.
The symposium was held online by organizations formed by pharmaceutical companies to spread awareness about the situation surrounding patients and their families, and approximately 160 people participated.
Among them, a representative from a pharmaceutical company introduced the results of a questionnaire survey conducted on patients with rare and incurable diseases. It was explained that this amounted to 75%.
A lecture was given by the father of a 6-year-old child who was diagnosed with Potocki-Lupski syndrome, which is a chromosomal abnormality that causes symptoms such as developmental delays.
The father said, ``Due to the lack of information, I was unable to reach a specialist and it took more than four years to receive a diagnosis.There was no one around me to talk to and my anxiety grew.Using digital technology, I was able to provide patients and their families with the information they needed. We need to create an environment that allows quick access."
Masahiro Ishida of the Japan Pharmaceutical Manufacturers Association, a group of pharmaceutical companies, says, ``There are issues such as a lack of information and low social awareness, so it is important to get as many people interested as possible.'' We were talking.
The 29th of this month is World Rare and Intractable Disease Day, and events about rare and incurable diseases will be held across the country.