【A Must-See for Families with Children Requiring Medical Care!】Recommended Communities for Building Connections Among Families

When you hear "about 20,000 nationwide," can you imagine how rare that is?

This number represents the children across the country who require medical care.

As of May 2025, Japan's population is approximately 110 million, making these children a very small minority at about 0.016%.

The number of children who require daily medical care, such as ventilators or tube feeding, is said to be increasing due to advances in medical technology that save more lives.

Nevertheless, because they are still a minority, the feeling of "isolation" experienced by children requiring medical care and their families is a significant issue.

Therefore, it is important to build communication among families with children requiring medical care.

This article provides a thorough explanation of communities that foster connections among families.

Reference: Trends in Policies Supporting Children Requiring Medical Care｜Ministry of Health, Labour and Welfare
Reference: Population Estimates｜Statistics Bureau of Japan｜Statistics Bureau of Japan

1. What Challenges Do Families with Children Requiring Medical Care Face?

"When you have parenting concerns, you consult with your mom friends."

Such a normal thing is not possible for parents of children requiring medical care. As mentioned earlier, because they are a minority, it's hard to find others raising children in the same way around them.

Due to their small numbers, even professionals responsible for local child-rearing support, such as public health nurses and child-rearing support centers, have few opportunities to interact with them, making it difficult to understand and support their concerns.

So, is there a place where parents of children requiring medical care can share their concerns?

While it may be difficult to find in the offline world, it exists online.

2. Introducing Communities Connecting Families with Similar Concerns!

2-1. "Snack Toromi," a Community for Families with Children Needing Meal Support

There are communities focused on specific disabilities.

One such community is "Snack Toromi," an online community created by parents of children with swallowing disorders who have difficulty eating or swallowing.

When you visit their homepage, you're greeted with a slightly retro design and the words "Oh, welcome," giving it a snack bar-like feel.

The page introduces the moms with photos, making it feel very friendly just by looking at them.

By signing up and becoming a "regular," you can participate in casual chat sessions and Zoom events such as seminars.

Because it's virtual, it seems easier to visit than actually opening the door to a snack bar.

The "Academic Toromi" content offers a wealth of useful information.

Additionally, the introduction of commercially available foods and recipes recommended by parents of children with swallowing disorders is a must-see.

Reference: Snack Toromi｜General Incorporated Association mogmog engine

2-2. Unleash

"Unleash" is a website full of information for families and supporters of children requiring medical care.

It envisions creating a society where children and families needing medical care, as well as their supporters, can live comfortably.

The experiences of moms with children requiring medical care provide real voices about daily life with such children, along with information to make daily life more comfortable.

There are also contents for children requiring medical care who want to enjoy fashion, which can be quite insightful!

The helpful resources section offers content addressing various concerns and questions, all available for free.

The use of images and videos makes the content easy to understand, which is another attractive feature.

Reference: Unleash｜Unleash

2-3. Tokyo Outing Project

The "Tokyo Outing Project" aims to provide various events with the motto "places you want to go rather than places you can go."

Even if you have medical equipment or suddenly make loud noises, the project features events where families can enjoy time together without worrying about the eyes of others.

In the past, they have held events providing families with their first outing experiences at Jimbocho Book House Café.

They hosted storytelling sessions and curry bread-inclusive exchange meetings, offering opportunities for family communication.

Additionally, events were held at ROSEGALLERY Ginza and Shiseido Parlor, allowing parents raising children requiring medical care to return to being "themselves."

Participants enjoyed experiences like professional hair and makeup guidance, portrait photography, and afternoon tea, spending time as "themselves" rather than as "parents." These events make it easy for parents who feel guilty to participate and connect with others facing similar challenges.

This warm initiative aims for a society where everyone can be themselves together, and it's definitely worth participating in!

Reference: Tokyo Outing Project｜Tokyo Outing Project

2-4. Association Supporting Children and Families with Medical Care Needs

The "Association Supporting Children and Families with Medical Care Needs" is a service provided by Wings.

Wings is engaged in activities to realize an inclusive society where children requiring medical care can naturally engage in work, hobbies, and community life.

The main content is the "National Map Creation Project for Families with Children Requiring Medical Care," which provides a map to find nearby peers for easy consultation.

As of April 2025, 64 groups across 28 prefectures are registered, and individual registrations are also possible.

They also host events called Wings Café, providing a community for parents to gather.

In addition to simply hosting events, they work to spread the voices of participants to the government and the general public, which is another appealing aspect.

Reference: Association Supporting Children and Families with Medical Care Needs｜Wings

2-5. Tsubame no Kai

"Tsubame no Kai" is a website providing medical information on feeding and swallowing disorders, tube feeding, and parenting information.

To alleviate anxiety, they host academic exhibitions and external training sessions.

By joining Tsubame no Kai, members can consult and exchange concerns via email with other users.

The regularly held exchange meetings serve as valuable opportunities for family communication.

They also provide information on hospitals that can examine children with feeding and swallowing disorders, which is quite convenient.

Reference: Tsubame no Kai｜Tsubame no Kai

2-6. Medical Care Kids Room

"Medical Care Kids Room" is a service established to provide a space for families with children requiring medical care to interact and receive advice from experienced supporters.

It's a community you should definitely join if you feel isolated because there are no children requiring medical care around you.

On the Medical Care Kids Room website, there are various communities and topics available, and you can easily participate by simply registering as a user.

• Illness
• Medical Care
• Medical Welfare Services
• System Allowances
• Therapy and Play
• Disaster Preparedness
• Meals
• Outings
• Preschool and Schooling
• Medical Equipment and Welfare Tools
• Family Room
• Supporter Room
• Regional Room
• Other Rooms
• Living

There are many participants in the community, and active communication is taking place.

Reference: Medical Care Kids Room｜General Incorporated Association Spesapo

2-7. Kakehashi Net

"Kakehashi Net" became a specified non-profit organization in December 2020 as a parents' association for raising children with medical care needs.

Based in Tsukuba City, Ibaraki Prefecture, they host fun events and make requests to local governments.

As a regular event, they host a summer festival, and in 2025, over 210 people participated, making it a great success.

They also plan to co-host a roundtable discussion with the Tsukuba City Association for Parents of Children with Physical Disabilities, offering many opportunities for easy communication.

Furthermore, they hold seasonal events throughout the year, allowing for participation year-round.

The activities of Kakehashi Net have garnered attention from various sectors and have been featured in various media.

Reference: Kakehashi Net｜Kakehashi Net

2-8. Bakubaku no Kai - Living with Ventilators

"Bakubaku no Kai - Living with Ventilators" provides a community for people living with ventilators and those living with them.

Founded in May 1989, it originated as an in-hospital family association at Yodogawa Christian Hospital, wishing for safe and comfortable hospital life and the joy of living for children with long-term ventilator use, and it has a history of over 35 years.

In 2015, the association was renamed "Bakubaku no Kai - Living with Ventilators," and as of August 2019, there were about 500 members nationwide.

Although based in Osaka, it supports a wide range with 15 branches nationwide.

Every August, they hold an annual general meeting, lecture, and exchange meeting, with member interactions occurring regularly.

Branch-level exchange meetings are also held, providing opportunities for communication among families with children requiring medical care.

Supporting members can join for an annual fee of 3,000 yen, so if you're interested, why not consider joining?

Reference: Bakubaku no Kai - Living with Ventilators｜Bakubaku no Kai - Living with Ventilators

3. How Can We Create a Society Where Children Requiring Medical Care and Their Families Can Live Comfortably?

There are many online communities beyond those introduced here.

These include those run by corporations and organizations, as well as many run by individuals on a volunteer basis.

In the case of individual operations, it can be challenging to continue due to the circumstances of the organizer or other reasons.

If you encounter a community run by an individual, please consider spreading the word to help it continue. You can repost on X (formerly Twitter), introduce it on your other social media, or tell your friends—whatever is easy for you.

Participate, spread the word, and contribute to its continuation.

Through small actions by each person, the recognition of children requiring medical care may gradually increase as the circle of awareness expands throughout society.

If the issues become more recognized, it could lead to creating a society where children requiring medical care and their families can live more comfortably.

4. In Conclusion

When you're in trouble, it's natural to want to "talk to someone" or "seek advice." This is the same for minorities. In fact, because there might not be people in similar situations nearby, they may more keenly desire connections and information from others.

There may be associations for parents of children with rare diseases or disabilities, but they might not exist in every region, and joining an already established community can sometimes require courage.

For those who feel anxious about social interactions, such as "Is it okay for me to participate?" or "I'm shy, so I'm worried about talking," online and anonymous options might lower the barriers.

If you're even slightly interested, start by taking a look. You'll likely realize, "I'm not the only one with these concerns."