Membership Information
If you agree with the purpose of this patient association and wish to become a member, please fill out the application form and send it to the administration office by e-mail or fax.
The administration office will properly manage the personal information received and use it to send various notifications to the member. Personal information will not be handled without the consent of the member or beyond the scope of use.
[Fax or e-mail the membership application form to]
TGCV/NLSD Patient Association Administration Office,
Patient Representative: Chikako Hashimoto
email:kanjakai@tgcv-pt-group.com
Purpose of Activities
1）To support TGCV/NLSD patients to live comfortably so that they can receive the best possible treatment.
2) To support patients and their families by conducting various educational activities through patient associations.
Activities
In order to achieve the above objectives, we will engage in the following activities
1) Exchanging information with other TGCV/NLSD patients and their families
2）Educational activities for society to make TGCV/NLSD properly known to as many people as possible.
4) Lobbying national and local governments, related organizations, and academic societies on various issues related to TGCV/NLSD.
3) Holding general meetings, study groups, and social events
5) Publishing a newsletter (four times a year).
Membership Rules for Patients’ Associations
Article 1 (Name) The name of this Association shall be “TGCV/NLSD Patient Association”.
Article 2 (Purpose) The main purposes of the Association shall be as follows
(1) We aim to support TGCV/NLSD patients to live comfortably so that they can receive the best possible treatment.
(2) We support patients and their families by conducting various educational activities through the patient association.
Article 3 (Activities) In order to achieve the above purposes of the Association, the following activities shall be carried out.
(1) Exchange information with other TGCV/NLSD patients and their families
(2) Conduct study sessions and social gatherings
(3) Public awareness activities to make as many people as possible aware of TGCV/NLSD.
(4) Lobbying national and local governments, related organizations, and academic societies on various issues related to TGCV/NLSD.
Article 4 (Membership) The Association shall consist of patients diagnosed with TGCV/NLSD, their families, and individual volunteers who support the patient association.
Article 5 (Officers)
(1) The Association shall have the following officers, and the President and Vice-Presidents shall be elected from among the members.
President (1), Vice-President (1), Advisor (1), Patient Representative (a few), Treasurer (1), and Treasurer-Auditor (1)
(2) The vice president assists the president.
(3) The treasurer shall be located in the administration office and shall manage the operating expenses of the association. The treasurer’s report shall be made once a year at the end of the fiscal year.
(4) The accounting auditor shall audit the accounts and make an audit report once a year.
Article 6 (Admission and Withdrawal) Admission to the Association shall be open to those who agree with the purpose of the Association and wish to become a member. The prescribed admission procedures shall be followed. In the event of withdrawal from the Association, membership is voluntary, but notification shall be made to the Administration Office.
Article 7 (Operating Expenses) The operating expenses of the Association shall be covered by donations and grants, and the fiscal year shall begin on April 1 and end on March 31. The administration of the accounts shall be properly managed by the Administration Office, and an accounting report shall be submitted at the end of the fiscal year.
Article 8 (General Meeting) The General Meeting shall consist of the regular members, officers, and administrative patient representative of the association, and shall be held when necessary and upon request from the President or officers.
Article 9 (Personal Information Protection) Personal information of members shall be managed by the administration office and used only for the purpose of the Association and its business. Members’ personal information shall be managed in accordance with the Personal Information Protection Law and related laws and regulations.
Article 10 ( Rules and Regulations ) Enforcement and modification of the Rules and Regulations shall be carried out with the approval of all the officers.
What is TGCV?
Triglyceride Deposit Cardimyovasculopathy (hereafter abbreviated as TGCV) is a new disease concept discovered in a heart transplant case in Japan in 2008, in which the accumulation of triglyceride in cardiac myocytes and vascular smooth muscle cells results in severe heart failure, cardiomyopathy, angina pectoris, etc. TGCV is an intractable disease. TGCV is an intractable disease that causes severe heart failure, cardiomyopathy, and angina pectoris as a result of accumulation of triglycerides in cardiomyocytes and vascular smooth muscle cells. What are the characteristics of TGCV? The pathophysiology of TGCV is an abnormality of intracellular lipid metabolism, resulting in the accumulation of triglycerides (TG) in the cells. Dyslipidemia and hypertriglyceridemia are common diseases that cause high levels of triglycerides in normal blood tests, but in TGCV, there is no correlation between the amount of intracellular triglycerides stored in cells and the level of triglycerides in the blood. It is also not associated with adipose tissue, which physiologically stores fat, nor is it related to body weight or BMI (body mass index), but studies have shown that diabetes is a common complication. By analogy, the heart is like a fat cell, storing triglycerides in the myocardium and vascular smooth muscle cells of the coronary arteries, so to speak.
What are the symptoms of TGCV?
It is considered to be innately healthy and mainly appears in adulthood and later in mature age, including cardiac symptoms. In terms of symptoms, in addition to chest symptoms of ischemic heart disease such as angina pectoris, patients complain of various and complicated symptoms such as breathlessness, shortness of breath, cardiac failure symptoms such as swelling, energy failure symptoms such as tiredness, coldness and numbness at the extremities resulting from diabetes mellitus, and so on. The TGCV severity score is currently being developed to determine the frequency of symptoms and the extent of activities of daily living in patients with TGCV.
Development of a New Treatment for TGCV
Currently, clinical research for a physician-led clinical trial is underway to develop a therapeutic drug, tricaprin, which reduces intracellularly accumulated triglyceride and improves energy deficiency, has been purified to a high purity and encapsulated. In order to overcome this intractable disease as soon as possible, the TGCV Research Group is conducting daily research to establish a diagnostic method for TGCV and a treatment method.
Greetings from the President
of the Patients’ Association
My name is Kawamura and I have accepted the position of president of the patient association since 2018. I was diagnosed with Triglyceride Deposit Cardimyovasculopathy (TGCV) in 2016 and have been dealing with this disease since then. This “TGCV/NLSD Patients Association” will be launched to promote information exchange among patients and their families and to raise public awareness of the disease so that patients and their families can learn more about the disease, including each other’s experiences. We believe it is important for this patient association to provide an overview of TGCV/NLSD, a disease that is not well known, as well as the experiences of patients, and to provide a voice for the association itself through the exchange of information among its members.
We would like to share what we, as patients, can do together with those who support us through the patient association. Thank you very much for your support.
Ikuko Kawamura, President of TGCV/NLSD Patient Association
Patient Association Structure
The TGCV/NLSD Patients Association is composed of patients with the disease and their families, as well as individual volunteers who support the purpose of the TGCV/NLSD Patients Association.
Number of members as of May 2022 are 111 (108 in Japan and 3 overseas)
Members’ Plaza Everyone’s Voice
This page introduces the voices of our members as a place for information exchange among members. We would like to provide you with your comments and opinions through our website and newsletters.