Intractable diseases in children are difficult to diagnose, and there are quite a few cases that do not lead to immediate treatment.
The site was established for "rare intractable diseases in children", which has a particularly small number of patients among intractable diseases in children.
Rare childhood diseases are more difficult to diagnose than common diseases. There are also cases where it is lost.
For this reason, support groups have established a website that introduces specialists and testing institutions so that they can find consultations if they are unsure of a diagnosis or do not know how to test.
Currently, there are two types of intractable diseases that are covered, but in the future, we plan to add about 100 types per year in cooperation with academic societies and patient associations. doing.
According to the Ministry of Health, Labor and Welfare, it is believed to be the first site to introduce a wide range of specialists for pediatric rare diseases.
Koichi Kawaguchi, executive director of the Healthy Parents and Children Support Association, which established the site, said, "If diagnosis and treatment are delayed, patients and their families will be financially burdened and may be driven into a corner mentally. I want to raise it so that it can be used by many family doctors."
URL: https://angelsmile.scuel.me