A private organization has begun support for the establishment of a patient association so that patients and their families can share their concerns about "rare intractable diseases," which have few patients and are prone to isolation.
The support started by the "Healthy Parent-Child Support Association", which supports patients with rare and intractable diseases.
Last year, when I conducted a questionnaire to families with children, I received many worries and anxieties that there was no one to talk to about child-rearing and work.
However, even if you try to establish a patient association, the opportunities for patients to get to know each other are limited, and many families cannot afford it, and the cost of renting an office is a burden.
Under these circumstances, in order to support the establishment of the patient association, the association has decided to offer referrals between patients and consultation on procedures.
The cost of establishment and operation will be subsidized up to 100,000 yen per year.
For inquiries
, please call 03 (6673) 0662, and the deadline for applications for assistance is 31st of this month.
Koichi Kawaguchi, Managing Director of the "Healthy Parent-Child Support Association," said, "Some families find it difficult to tell people about their illness, but if there is a patient association, they can solve their problems together. It will be easier to connect with, so please consider establishing it positively. "