Pediatric Brain Tumor Network of Japan
We are a network of brain tumor patient groups to facilitate the exchange of information and to pursue the improvement of treatment and Quality of Life for patients and families.
*cranio park* for Craniopharyngioma Patients and Families
*cranio park* is a support group for Craniopharyngioma (Cranio) patients and the families. We exchange information through Facebook and SNS membership. For those affected by Cranio, you are not alone, join us and unite with each other to move forward!
Ependymoma Parent’s Community
This association was formed in 2013 to share information on ependymoma among patients and families. We mainly communicate through Facebook to help patients overcome difficulties when they are diagnosed with ependymoma and to encourage each other on ways to cope with the disease.
Pediatric Brain Tumor Support Group in Kinki Area “Miracle Brain”
An association of brain tumor patients and families in the Kinki area. We call ourselves “Miracle Brain”!! We encourage, help, and learn from each other through various means of warm and hearty conversations.
DIPG Symposium Organizing Committee
We organize symposia focusing on Diffuse Intrinsic Pontine Glioma (DIPG), with the purpose of forming a common view regarding the issues and challenges we are faced with among experts, regulators in public offices, and patients’ families. We aim to obtain appropriate solutions on issues, such as further promotion of development of pediatric brain tumor treatment, improvement of terminal care, and grief care services available for patients and families.
Child Brain Stem Glioma Network
Diffuse Intrinsic Pontine Glioma (DIPG) is a type of brain tumor found in an area of the brainstem, commonly known as “the pons”. It is it one of the most severe pediatric cancers with no effective cures established at this time. We are an association of DIPG patients and families, and bereaved families. The main activities include sharing information on bulletin boards, publishing ‘VOICE’, a bulletin with commentaries on the disease, promoting awareness of the disease, and lobbying to the government to promote support for the treatment and welfare of patients and families.
Child Brain Tumor Parents Support Group
Established in 2002, this association of patients and families fighting against pediatric brain tumor aims to enhance Quality of Life of patients and their families by sharing information, helping each other in difficult times, and promoting a better environment for treatment. We organize outings and excursions for both patients and families, as well as doctors can meet and get to know each other. We express our opinions and lobby to the government to further enhance the treatment of the disease. We also run the Pediatric Brain Tumor Network, connecting other patients and family support groups with pediatric brain tumor.
The Family Support Group for the Pediatric Brain Tumor Patients
At our association, the patients and families of pediatric brain tumor are sharing each other’s experience to overcome difficulties regarding the treatment, late effects, post treatment care, school life, and employment. The association originated from a group of patients and families of germ cell tumor. If you wish to participate, please join us on our LINE App community for germ cell tumor patients.
General Incorporated Association Torukokikyou
This association is established as a non-profit organization to conquer DIPG, a pediatric brain tumor that does not have a cure at this time. We send toys as gifts to the patients’ home and help them to cope with the difficult times they face from the DIPG. We also provide policy proposals to relevant government departments to promote solutions of cure to this disease. We always hope that the patients and families can spend their precious time together in a better environment.
Niji-iro Densha, meaning, ‘Rainbow colored Train’, is a family gathering community for the parents and children who have been treated at Tokyo Women’s Medical University Hospital for child brain disease such as child brain tumor. This year, we mark our 15th anniversary. It holds a firm position to exist as the place for all members who are under treatment, recovered, or families who had lost their loved ones from the disease. We have high hopes to be their home for all when in need and not to leave anyone behind after returning to their community.
Japan Brain Tumor Alliance
We (JBTA) are a non-profit organization which aim to establish a network of brain tumor patients and their families, medical experts, and welfare and education experts to support brain tumor patients and their family.
Asahi Kato “a ray of light” Project
Founded in 2017 and named after Asahi Kato, a young and gifted Japanese composer. Asahi started composing music when he was only 4 years old and passed away at the age of 16 due to a brain tumor. Soon after he completed his final scores and the recordings, he departed for his eternal rest, leaving behind about 500 pieces of music. This organization hopes to share Asahi’s beautiful music to the public and spread his brave and inspirational life story. All activities are made possible through the supporters and donations.
Lemonade Stand for Pediatric Cancer Support Group
Our activities include organizing gatherings and outings among patients and their families of pediatric brain tumor to help them understand the disease and to better connect them. We conduct organized talk events, UNO play cards tournaments, reading circles, overnight outings, lemon picking trips and much more with the kids.
Yokohama Children’s Hospice Project
Children’s hospice provides an alternate way to life outside of a hospital while getting palliative care for children and their family with life-limiting or life-threatening conditions (LLTC). We provide full palliative care and a place to support children to grow and develop their abilities. It is not a hospital; it is their home. It is a place created for patients and families to continue to have an enjoyable life meanwhile getting the care and attention needed. Although the disease may be severe and possibly disabled a child; however, it is a place where children are respected and can live their life to the fullest extent as possible while being surrounded by their loved ones, family, and friends. Together with our sponsors and supporters, we are determined to assist the families spending their precious time with their children. The Children’s Hospice in Yokohama will be opening in Autumn 2021.
Pediatric Cancer Patient Support Group Referral
Chidlren’s Cancer Association of Japan
The association was established in October 1968 by bereaved parents of pediatric cancer patients. It was with determination to establish an effective cancer therapy and to help parents who have pediatric cancer children. Since then, we have been providing consultation services for parents, financial aid for treatments and studies, and awareness raising campaigns for pediatric cancer. There are 21 regional offices in Japan, and we are extending our activities and services in a manner suitable for each region.
Gold Ribbon Network
For the purpose of contributing to the creation of a society where children with cancer can live safely and with smiles on their faces. We have three pillars of activities; providing support to improve Quality of Life of pediatric cancer patients after their treatments, providing aid to studies for improving therapeutic ratio of pediatric cancer, and providing information on pediatric cancer and raising awareness of the disease. We support patients, as well as post treatment patients and their families to guide them through continual education and obtain employment as they grow into an adult.
Japan Children’s Cancer Group (JCCG)
Japan Children’s Cancer Group (JCCG) was established in December 2014 as an NPO corporation and as a clinical research group for childhood cancer. JCCG comprises nearly of 200 institutions capturing almost all hospitals specializing in pediatric cancer treatment in Japan including university hospitals, local and central children’s hospitals, and general hospitals (those with training facilities in pediatric hematology and cancer). JCCG is engaged in a broad range of high caliber clinical research that prioritizes clinically meaningful output while abiding by strong ethical standards.