I. General Provisions
1. (Name) The official title is designated as Dravet Syndrome Japan
2. (Office) The executive office is located at the home address of the chairperson.
3. (DOB) DSJ was established on 2015.7.1.
- We strictly comply to the laws and ordinances concerning the management of personal information and also maintain up-to-date security services.
- We assign an administrator to collect and protect all information. When unauthorized use, loss, destruction, manipulation, and leakage of the information is found, appropriate measures will be taken.
- When collecting personal information, we will reveal the reason of information collection.
- We take precautions to protect personal information and will not abuse it.
Ⅱ. Objectives and Operations
5. (Objectives) DSJ is a nonprofit organization dedicated to improving the lives of those affected by Dravet syndrome through sharing information, working for early implementation of Buccolam, and etc.
- Promoting communication and support among parents and caregivers
- Connecting and interacting in Dravet research conferences
- Connecting and interacting with facilities that support Dravet patients
- Providing publications via website, mail magazine, bulletins, and related books
- Implementing projects for early implementation of Buccolam
- Implementing projects for raising awareness of Dravet syndrome
- Hosting gatherings of Dravet families
- Implementing other necessary projects accordingly
- Our members are composed of people who agree with 5. Objectives.
- DSJ is composed of members who are in the following 5 categories.
a. Family members or caregivers of Dravet patients
b. People who support our objectives
c. Groups who support our objectives
d. Researchers or Conferences who support our objectives
e. People who have contributed to DSJ and are also recommended by DSJ board members
- To become a member of DSJ, a submission of the application form is necessary.
- Membership will be confirmed by DSJ after an admission’s examination.
- Members are required to pay a membership fee decided by DSJ.
- Members are required to pay the yearly membership fee by the deadline decided by DSJ.
- Notification by the member is necessary for withdrawal from DSJ.
- When TOS violation is detected, dismissal from membership is applied after a board member meeting resolution.
9. (Prohibited matters)
- Implementing religious and political activities
- Implementing sales and solicitation
- Offering false medical information
- Slandering an individual DSJ member or DSJ
- Leaking personal information obtained through DSJ
- Interfering with DSJ’s objectives and operations
10. (Operating expenses)
- Membership fee are used as DSJ operating expenses.
11. (Board members)
- One chairperson
- One vice-chairperson
- A necessary number of directors appointed by the board of directors
- One auditor
12. (Election and tenure of the board members)
- Board members are elected in plenary meetings.
- Tenure of a board member is one year. However, reelection is allowed.
- Board members must perform his/her duties after resignation until a successor assumes the position.
- When a board member resigns during his/her tenure, the successor’s tenure is the remaining term of his/her predecessor.
13. (Duties of board members)
- The chairperson represents DSJ and presides over the work of DSJ.
- The vice-chairperson assists the chairperson and takes the chairperson place when the chairperson is unable perform his/her duties.
- Directors organize the board of directors and perform their duties.
- The board of directors can elect a necessary number of standing directors and entrust them with duties of DSJ.
- The auditor audits DSJ’s accounting.
14. (Compensation of the board members)
No compensation is given to board members.
15. (The board of directors)
- The board of directors makes decisions on the following 8 items:
a. Operation planning and budgeting
b. Membership fees
c. Matters to be discussed in plenary meetings
d. Matters concerning operations decided in plenary meetings
e. Duties of the directors
f. Waivers of borrowings and others burdens from duties and rights
g. Dismissal from membership
h. Other matters concerning operations without the need of a plenary meeting decision
- Minutes shall be prepared with the following information
a. Dates and places
b. Number of acting directors
c. Number and names of directors who attend the board of directors (The same applies to meetings conducted on paper or online)
d. Examination agenda
e. Provide a record of the proceedings and the outcome of the plenary meetings
16. (General Meeting)
- General meeting may adopt resolutions on matters regulated in these Terms of Service, along with organizational, operational, administrative, and any other affairs concerning DSJ.
- The president calls an ordinary general meeting once every year.
- The president may call an extraordinary general meeting whenever the president deems a meeting necessary.
17. (Decision on the convocation of a general meeting)
- The president specifies the following matters when a general meeting is called:
a. The date, time and place of the general meeting
b. The purpose of the general meeting when there is a particular purpose
c. Call into effect when members absent from the general meeting may exercise their votes in writing
d. Call into effect when members absent from the general meeting may exercise their votes in the form of electromagnetic record
- The decision on matters listed in the preceding paragraph when made by a board members resolution.
18. (Notice of a call for a general meeting)
- In order to call a general meeting, the president releases the notice of a call for the general meeting to the members no later than two weeks before the meeting date.
- The president may release the notice referred to in the preceding paragraph through electromagnetic means.
- The notice referred to in the preceding paragraph states or records the matters specified in Paragraph 1 of the preceding article.
- The voting right of each member at the general meeting shall be equal.
- A member who is absent from a general meeting may delegate a voting right to another
member in attendance either in writing or by electromagnetic means which is also regarded as being in attendance.
- A general meeting resolution is adopted by a majority of the attending members at a general meeting where the majority of the DSJ members are present, unless otherwise provided for in these Terms of Service.
- The exercise of a voting right through electromagnetic means is conducted through provisions of the matters to be specified in the voting form by electromagnetic means no later than one week before the date of general meeting.
- The number of voting rights exercised through electromagnetic means pursuant to the preceding paragraph shall be included in the number of voting rights of the members in attendance.
20. (Omission of a general meeting resolution)
- In cases where the president makes a proposal on matters that form the purpose of the general meeting, when all the members vote to approve the proposal in writing or by electromagnetic record, it shall be deemed that a general meeting resolution to approve the proposal is adopted.
- In cases where it is deemed that the resolutions to approve proposals on all matters that are the purpose of ordinary general meeting have been made at the general meeting pursuant to the provision of the preceding paragraph, such a general meeting shall be deemed concluded at that time.
The president shall submit a report on the process and results of the projects in the previous year along with the general outline of plans on the projects of the current year to the members and obtain approval therefrom.
22. (Omission of a report to the general meeting)
In cases where the president gives notice on a matter to be reported in a general meeting to all the members, when all members make a manifestation of intension in writing or by electromagnetic record to approve that the matter does not require a report in a general meeting, it shall be deemed that a report on that matter is submitted to a general meeting.
21. (Account settlement)
- Fiscal year of DSJ shall begin on July 1 each year and end on June 30 of the following year.
- A settlement of account shall be subject to audit by an auditor and be approved by the general meeting.
Ⅴ. Revision of the provisions and dissolution
23. (Revisions of the provisions)
The provisions of these Terms of Service may not be revised without the consent of not less than a half of all of the members.
DSJ may not be dissolved without the consent of not less than a half of all of the members.