NPO PanCAN JapanNPO / President
In addition to being the first president of RCJ, I am a pancreatic cancer survivor, and the chairperson of NPO PanCAN (Pancreatic Cancer Action Network) Japan. RCJ is a support group for patients and families with rare cancers.
In April 2013, I was underwent a resection of a pancreatic neuroendocrine tumor (PNET), which is classified as a rare cancer. Before receiving the PNET treatment, I fainted three times with insulin attacks, toppled over and suffered a serious injury, from which I did not understand the cause for a long time. Unfortunately, as with me, many rare cancer patients suffer because rare cancers are difficult to diagnose.
Along with the arrival of genomic medicine, light has also come to this area of rare cancers, as it gives the possibility to discover drugs that could be used based on the genomic analysis of cancer cells.
In order to bring this medical care to patients as soon as possible, policy advocacy activities to the administration are important, but it is also important to work with academic societies, researchers, and companies to cooperate in drug discovery activities. The patient association is now asked to become a side promoting drug discovery from the the side waiting for new drugs. It is also important to deepen collaboration with European and American academic leaders in research on rare cancers and members of the international community to take on a stronger role as the patient association. For the coming two years, although it is a short time, I am motivated and dedicated to proactively proceed with the activities.
Thank you for your guidance and support.
Cure Sarcoma / President
I am the chairman of Cure Sarcoma NPO, an association for soft tissue sarcoma patients and their families. In 2005, I took over the lead of the “Association for Promoting Targeted Gene Therapy of Sarcoma (Cure Sarcoma), which was launched by my wife. The organization became an NPO in 2014.
Adult soft tissue sarcoma cancer is called the, “forgotten cancer” because there is no treatment at this time and largely effects the chest, abdomen, and gynecology areas. In Japan, about 3,000 people annually develop sarcoma cancer. Since there are many cases where recurrence and metastasis are repeated, where continuous treatment is necessary; not only high medical costs but also mental damage are problematic for sarcoma patients.
The Cure Sarcoma NPO aims to relieve the patient’s anxiety and to contribute to the realization of life beyond the cancer. Additionally, it aims to improve the cancer environment through new treatments, research and exchanging opinions and ideas. We also encourage a positive outlook towards new treatments and relieve the tension from anxiety through support and open communications from other members and fellow sarcoma patients.
I hope that in the future, by cooperating with rare cancers groups in the world, new treatments will be discovered and made available to all cancer patients.
GISTERS / President
In 2002, my wife was diagnosed with GIST, a gastrointestinal stromal tumor. Despite my wife with only having two months to live and suffering from GIST, I started to gather research and information about the cancer to share with other patients and families. I am the chairperson of GISTERS NPO. This originally small rare cancer patient community grew into a large well-known community through networks.
My goals are to make a request to the country to change the treatment environment, to help the patients with the same illness, expand the network to reach all rare cancer patients, and work together on discovering new treatments.
Director / Secretary
Pediatric Brain Tumor Network of Japan / President
In 1998, my one-year old daughter was diagnosed with medulloblastoma cancer. In 2003, I joined the Pediatric Brain Tumor Network (PBTN) to share information from experiences with other patients who were at a loss without knowing where medical expertise was at that time. Pediatric brain tumors count more than 100 categories
PBTN provides information pertaining to brain tumor for families and patients through bulletin boards, social gatherings, lectures, petitions, and symposiums where questions can be addressed and experiences shared. PBTN collaborates with other brain tumor association or children cancer associations nationwide to improve pediatic cancer care and quality of life.
Although the establishment of expertise on each disease of pediatric cancer (considered as rare cancers) in childhood cancer center hospitals, where an increase in the concentration of the rare pediatric cancers has been observed, , there is a gradual lack of pediatric oncologist and development in cancer treatment. Children with rare cancers are very effective with the chemotherapy and radiation treatment despite that the pediatric medical environment is still in the stage of development. Unfortunately, complications and disorders due to treatment are conspicuous and it is more likely to suffer from secondary cancers and adult diseases after 10 or 20 years. We have considerable hopes in new treatment and novel drugs which do not cause complications related to the cancer or treatment or after-effect, as well as in psychological support for those experience a lifetime with complications.
Along with the arrival of genomic medicine, we share the challenges of being scarce for adult rare cancer patient groups, and collaborate with the industry, government and academia as well with the worlds, with the aim to reach most efficiently a better future for our children.
PMP patients’ network of Japan / Vice President
I am a pseudomyxoma peritoneal cancer survivor, which is a rare cancer found in the abdomen. Due to the rarity of the cancer, my general doctor was not able to diagnose the symptoms I was experiencing which prolonged getting proper treatment. I am very thankful for the pseudomyxoma peritoneal support group because they helped me understand the symptoms and find a specialized doctor to treat the cancer. I appreciate with gratitude my appointment as the Vice President of PMP Patients’ Network of Japan.
With the establishment of RCJ, I feel confident that this larger organization, while gathering several individual groups, will support our request for improvement in pathology diagnosis without regional difference, establishment of standard treatment, enrichment of regional medical cooperation, environment susceptible to treatment at a high-volume center, and new drug discovery.
As Director of RCJ and in charge of the RCJ website, I would like to thank everyone for their continual support and cooperation.
Japan Sarcoma Patients Network “TANPOPO” / President
As the representative of the Tanpopo Sarcoma Cancer Association and working with RCJ, I will do my best to solve common problems. My experience with sarcoma cancer has been far from fortunate. In 2000, I underwent surgery for unknown benign cancer only to relapse and return for second surgery 12 years later. The accurate diagnosis was not established until this relapse when I was diagnosed with sarcoma cancer and transferred to a specialized hospital. I am currently under observation after the second surgery.
My experience from the misdiagnosed and inappropriate treatment has made me well-aware of the importance of information, research, and patient associations. Recently, I was talking with fellow patients about the disadvantages of rare cancers at the patient association. It is due to the small number of patients with rare cancer, limited treatment options, and minimal research available about the rare cancers. Currently, only 15% of cancer patients are diagnosed with having a rare cancer and even smaller percentage when the rare cancers are separated. I strongly believe not only the patients, but also the medical personnel should all collaborate and combine our strength for the same goal and direction, both in Japan and in the world.
Today, our hopes are raising toward genomic medicine, which does not focus on specific cancer types and allows to develop and promote personalized medicine, .. It is important to spread the word about genome treatment and with the help of the RCJ, we can gather our feelings to solve common problems and further develop the technology, promote specialized treatment, and provide information which is currently missing among rare cancers patients.
JAPAN BRAIN TUMOR ALLIANCE / Vice President
Born in Yokohama. I lost my 6-year-old daughter from a DIPG brain tumor in 1998. Since 2003, I have been involved in the pediatric medical support activities and established Smile of Kids” an NPO corporation. and hosted a musical concert At the Kanagawa Children’s Medical Center, involved in child support, such as in-hospital concerts and family support, the construction funds collected in the 2008 fund raising activities allowed the opening of “the House of Lila”, an accommodation facility for families coming to treat diseases such as intractable diseases..
In 2006, I was appointed the vice chairman. at the establishment of the Japan Brain Tumor Alliance,
My motto is “To change the future for the children and families with cancer illness and disabilities”.
Together with administrators and local supporters, by 2020 I aim to establish a home support facility called “UK-type children’s hospice” for children and families with no treatment methods for rare cancers. I would like to continue my fight to end all malignant tumors depriving our young children of their lives.
FUTATSUBA – Thymoma/Thymic Carcinoma Patient Support Group / Co-president
During a meeting in October 2015, in Akita Prefecture with Ms. Setsuko Kondo, representative of thymoma, Ms. Junko Kagaya, the Administration director of thymus carcinoma, we established the patient association Futatsuba. From that time we agreed that, in order to increase the focus of the society and health care professionals in this tumor with no treatment method established and little information, it is essential for us to be very communicative”.
In 2007, I lost my husband to thymic carcinoma The thymus is an organ that protects the body from infections by making white blood cells, called T lymphocytes. and is named “Futatsuba” because of the dual leafy shape. Thymic carcinoma often metastasizes to other ogans and bones at time of diagnosis. Many thymoma patients have complications such as myasthenia gravis, erythroblasts, Sjögren’s syndrome, or metastasis to the thoracic cavity.
We are looking forward to the establishment of a treatment method by continuing surgery, radiation and anticancer drug treatment. We have great hopes for genomic medical treatment development and we plan to cooperate with RCJ on research and development as well.
JAPAN BRAIN TUMOR ALLIANCE / President
I am Belgian living in Japan for over 15 years and the president of the NPO Japan Brain Tumor Network (JBTA) since May 2018..
Early 2016, after being diagnosed with a brain tumor, I underwent two awake surgeries to remove most of the tumor. The surgeries were followed by radiation and chemotherapy, which is still ongoing due to the presence of remaining tumor.
Living with a rare cancer and experiencing it first hand, I wanted to further contribute to improve cancer patients’ lives (specially rare cancers) in Japan and abroad, and became the representative of rare cancers patient association (JBTA and RCJ), I wish to focus on contributing to advanced research and treatment, (which includes genomic medicine), believing this will eventually lead to an improvement in the environment of all cancer patients.
I believe that further progress will be made not only by Japan, but also by strengthening cooperative relationships with Asian countries, academies in Europe and the US, pharmaceutical industry, regulators and patient organizations. Through the efforts of each and every one of us, I hope to find a cure for all cancers starting with rare cancers.