Bylaws EU-NN

Bylaws of the EU-NN e.V.,
European Narcolepsy Net

1 Name and location

The name of the association is „European Narcolepsy Network (EU-NN)”. It shall be registered in the chamber of registers and is then named „e.V.” (registered association).

1.2
The association is registered in Marburg, Germany.

1.3
The association was founded on 09^th of February 2008

1.4
The association remains neutral on politics, races and religions.

1.5
The fiscal year is the calendar year.

1.6
The association is founded exclusively and directly for non-profit purposes according to the part „tax-privileged purpose“ of the German fiscal code.

2 Objectives of the association

2.1
Objective of the association is the promotion of the European scientific research in the field of narcolepsy and central disorders of hypersomnolence, and the optimization of medical care for patients by improving diagnostic and therapeutic measures. A close co-operation of physicians, scientists, as well as patients and their family members is to be developed further and will facilitate a fast knowledge and information exchange in the field of narcolepsy and hypersomnia. Therefore the association wants to contribute to and improve the European information and communication structures and to support the establishment of standardized patient data banks.

2.2
The statute’s purpose in particular will be carried out by the following measures

1. fusion and integration of European experts in the area mentioned in 2.1
2. initiation and execution of scientific projects in basic and clinical research as well as research in health care of of the areas mentioned in 2.1 which are not or only partly supported by public organisations or industrial sponsoring
3. execution of scientific meetings, seminars and advanced training activities
4. co-operation with European and non-European scientists and scientific organisations, research projects or consortia, that could support the objectives of the association in the areas mentioned in 2.1
5. collaboration with other European research societies
6. to provide grants to members and non-members for participation in scientific and educational meetings
7. publication of research results, guidelines, and recommendations for socio-legal aspects and unmet needs.
8. transfer of results into applicable tools
9. cooperation and support by public organisation, self-help groups and industry
10. to provide support for European level activities of patient groups

3 Non-profit entity 

3.1
In all its activities, the association will maintain no economic interest and will be organized and function as a non-profit entity. 

3.2
The funds of the association may only be used for achieving the purpose of the association. The members do not receive any remuneration from the funds of the association.

3.3
No person may benefit from spending money that disagrees with the purpose of the association or from unusually high remuneration.

3.4
Persons in a honorary capacity may only receive reimbursement of their documented expenses.

3.5
Any European sleep center whose EU-NN full individual member (or members) actively participate in the EU-NN database can become a EU-NN Database Center. EU-NN Database Centers must follow the rules for database membership as stated in these bylaws.

3.6
The prospective database consists of two separate databases sharing the same structure. The first contains data based on information gathered prospectively and according to the formulated EU-NN standards. The other database contains prospectively gathered data, which are only in part gathered according to the formulated EU-NN standards.

EU-NN database centers must provide data of at least five patients with narcolepsy or hypersomnia or follow-up data annually at their own expense. Quality of the data will be reviewed by the board and must be considered adequate for inclusion into the data bank.

The content of all databases and any changes of it, after its final implementation, will be based on a 2/3 majority of votes of the Assembly of members.

Each member owns his/her own data in the database. By entering data the owner gives EU-NN the permission to use that data according to the bylaws and guidelines of the EU-NN (in the supplement to these bylaws). Members have the right to remove patient information from the database, with or without the request of the patient.

A permission to use data in any publications must always be asked from the owner of the data.

Members who want to have access to other than their own data must have permission from the owner and the Board. The member/individual of a center is owner of the biosamples and may contribute his samples to scientific projects approved by the board, as outlined in the EU-NN guidelines.

The procedures and rules for the use and storage of biosamples will always be guided by European and national laws and ethical principles, and will be updated whenever necessary. They will be written down in guidelines.

4 Membership

4.1
Any person or institution involved in narcolepsy or central hypersomnia research or similar areas, or with an active interest in this area, may become a member of the EU-NN. The EU-NN supports applications for membership from scientists from a wide range of disciplines. Interest in basic, applied or clinical sleep research is a condition of membership. The EU-NN is in principle an association for European scientists; however, applications for certain membership types from individuals and groups outside of Europe are welcome. The Board decides upon each membership request and has the liberty to ask for additional references.

4.2
It is to be differentiated between

1. Full Individual Member. These are European MD, PhDs or other health care professionals/researchers with an academic degree. To become a full individual member the person must be clinically or scientifically active in an area related to goals of the EU-NN. Full membership includes voting rights and gives the member an opportunity to be voted for any position.
2. Junior Individual Member. These are PhD-students, residents and similar. A junior individual member must be clinically or scientifically active in an area related to goals of the EU-NN. Junior membership does not include voting rights and the member can not be voted for board positions.
3. Associate Individual Member. These are European and international health care professionals and researchers active in an area related to goals of the EU-NN. The Board can grant the status of associate member to former longstanding members who are retired. Associate membership does not include voting rights and the member can not be voted for any position.
4. Honorary Individual Member. The Board can grant the status of honorary member to researchers who have yielded outstanding contributions to the field of sleep research or sleep medicine. Honorary membership does normally not include voting rights and the member can not be voted for any position. Honorary members have voting rights if they have been long standing full individual members.
5. Corporate Member. Juridical persons (corporations), legal entities of the public and private right can become EU-NN Corporate. The Board decides the benefits of corporate members. Corporate membership does not include voting rights and the member can not be voted for any position.

4.3
Only full individual members have a right to vote. To practice the right to vote another member can be authorized in writing. The authorization is to be given for each Assembly of the members separately. However one member may represent no more than one additional voice by authorization. Natural and legal entities of the public right, who become active in the sense of the afore mentioned statute purposes or who will support the objectives of the association by financial, idealistic and other achievements actively can become supporting members of the association. They do not have a right to voting (non-voting members)

4.4
The written application for membership is to be addressed in writing to the Board, which finally decides on each request in the next board meeting. The decision is to be communicated to the applicant in writing, it requires no reason and cannot be contested. Members need to agree to follow the guidelines (see supplement 1 of the bylaws) which are built on mutual trust and confidentiality.

5 Termination of membership

5.1
The membership ends

1. with the death of a member
2. by voluntary termination of the membership
3. by exclusion from the association

5.2
The voluntary termination is declared with a written statement to a member of the board. It is only allowed at the end of the calendar year within a 3-month’s term of notice.

5.3
Membership of any member may also be terminated in case of violation of the association’s interests by a decision of the Board, which must be announced and approved in the following Assembly. Before a decision of an exclusion is made, the member has to be offered the opportunity to justify any reasons personally. In case a written declaration to the membership has been submitted it has to be read within the Assembly of members.

6 Membership fees

Membership fees are paid on a yearly basis, set on 25 € for full individual members, 10 € for junior and associate members, and 5,000 € for corporate members. In special cases the board can decide to exempt associate members from paying membership fees. Honorary members do not pay a fee.

The assembly will decide on any change of this amount or any additional fees. The Assembly can also abstain from raising membership fees.

7 Organs of the association

7.1
the organs of the association are

1. The Board
2. The Assembly of all members

7.2
Further organs can be formed or dissolved by resolution of the Assembly. If the new organs have only advisory function, it therefore requires no amendment of the by-laws, if the Assembly of members as an organ at the same time issues an agenda obligatory for the new organ.

8 The Board

8.1
The Board according to German law consists of the

1. president
2. vice-president
3. secretary
4. treasurer and chair of funding committee
5. chair of the teaching committee
6. chair of the scientific committee
7. chair of the database management committee

8.2
The president has to be a European citizen and must be a full individual member. All members of the board must be full individual members.

8.3
The president and vice-president must be elected by all members at the general assembly. An elected president serves two years, and can be re-elected up to two times. If the president steps down from the role during a term, the vice-president takes over the responsibility of president.The roles as treasurer, secretary and chairs of committees can be decided by the members of the Board if the Assembly has not done so. It is not allowed that one person takes over more than one position of the board. The board members need to agree to follow the guidelines (see supplement 1 of the bylaws).

8.4
With equality of votes, the voice of the president as the leader of the board decides. At least half of the members must be present so that a meeting can make a decision.

8.3
Minutes will be hold for each meeting. The minutes will be distributed to all members of the Board.

9 Representation

9.1
The association is represented legally and extra-legally by two board members conjointly. Legal documents must be legally signed by two Board members including a) the President or Vice-President (in the absence of President) and b) the Treasurer or Secretary.

 9.2
The right of representation of the Board is limited to the property of the association and its databank

10 Duties and responsibilities of the Board and the committees

10.1
The Board is responsible for

1. the current business of the association
2. the execution of resolutions of the Assembly
3. to develop the financial plan
4. to record book keeping on incomes and expenditures of the association (total revenue)
5. decision on admission of further members
6. task distribution and control of business activity
7. Control of projects for accordance to the ethical principles of the Helsinki Declaration
8. Control the use of the database
9. Control the use of biosamples for scientific purpos
10. To approve or disapprove suggestions of the committees.
11. Control to act according to European and national laws regarding privacy, data protection and the use and storage of biosamples.
12. Control the proper execution of the bylaws and guidelines
13. Committees: The board can nominate committees for important board tasks. The members of the committees must not be approved by the assembly
14. Regular contact with relevant patient groups

10.2
Permanent committees in the EU-NN are the scientific committee, the database committee, the funding committee and the teaching committee.

10.3
The Board decides which member is chair of the respective committees.

For each committee, the secretary can be decided by the members of the Committee if the Assembly has not done so. With equality of votes, the voice of the chair as the leader of the committee decides.

10.4
At least half of the members must be present so that a meeting of a Committee can make a decision.

Minutes will be hold for each meeting. The minutes will be distributed to the Board.

10.5
In the Assembly each Committee will give a report of the yearly activity.

10.6
Specific tasks and duties of the Committees

a. Scientific Committee

1. 1. Scientific issues.
   2. Handling of the proposals for new projects
   3. Controlling for the scientific quality of projects
   4. Other issues related to research
   5. Program planning for Narcolepsy Day together with local organizer
   6. Reporting to the Board and to the Assembly

b. Database Management Committee

1. 1. Issues related to the implementation and use of the database
   2. Deciding, controlling and advising the database manager. The database manager can be a member of the EU-NN or outside of the EU-NN.
   3. Financial issues related to the database together with the treasurer and the Board. All possible salaries and reimbursements must be approved by both the Assembly (in the Budget) and by the Board.
   4. Quality control of entered data of all member centers
   5. Reporting to the Board and to the Assembly

c. Funding Committee

1. 1. Issues related to raising funds for the Association
   2. Contacts with Industry
   3. Advertisements
   4. Reporting to the Board and to the Assembly

d. Teaching Committee

1. 1. Issues related to the teaching activities of the Association
   2. Planning program of Narcolepsy Master Class
   3. Reporting to the Board and to the Assembly

11 The term of office of the board

11.1
All terms of office will be for two years beginning with the day of election. The board holds office until the re-election of the board.

If a member of the board leaves the board during the turn, the board can elect a substitute member from the pool of members. During the first Assembly after the substitution the Assembly will elect a new member to the board among all regular members of the EU-NN.  No more than 2 board members may be changed in a turn according to this procedure. If more board members leave, an Assembly must be scheduled within 3 months, and the Assembly will decide about the composition of the board.

11.2
The reelection of a board member in the same position is possible for further four years. The maximum membership in the board in a sequence will be 6 years.

12 Decision-making of the board

12.1
The Board seizes its resolutions generally in board meetings, which will be announced by the president or vice president in writing, by phone or via email. In each case a fourteen-days announcement is to be kept. Important issues in the Agenda must be given beforehand so that each member knows about possible important decisions. No financial decision or decisions about future projects can be made without mentioning them in the agenda beforehand. The announcement does not require the agenda. The Board can make decisions, if at least fifty percent of the members of the board, among them the president or the vice president, are present. During the procedure on adoption of resolutions the majority of the delivered valid voices decide. With equality of votes, the voice of the president/vice president as the leader of the board meeting decides.

12.2
The board meeting is chaired by the president, if not available by the vice president.

Resolutions of the board are to be proofed in minutes and signed from the leader of the meeting.

12.3
A decision of the board can be done in a written form or by phone, if all board members agree on that mode of action.

12.4
The board meets at least once per year

13 Honorary work of the board

13.1
The Board leads its business honorary. Personal expenses, which result from the Board activity, can be reimbursed in appropriate form.

14 Rules of internal procedure

14.1
The Board can give itself rules of internal procedure

15 Liability of the Board

15.1
The Board is liable for practice of the office by willful intent or groce negligence

16 Administrative Office

16.1
For the realization of the current business the Board is authorized to establish an office and employ regular staff.

17 Financial auditor

17.1
The auditor is selected by a simple majority of votes for the duration of two years by the Assembly of members. He/She examines all book keepings of the association and verifies the accounts. The auditor is not allowed to belong to the Board, and is not subject to the Board instructions and should therefore examine the financial business independently.

18 Assembly of all members

18.1
Each regular member present has one vote in the Assembly of the association.

18.2
The obligatory items on the agenda are:

1. Annual reports, financial statements, and auditor’s reports of the two years preceding the meeting
2. Ratification of the financial statements and decision about granting an exemption from liability to the members of the Board. Ratification of the choice of the Auditor for the coming period
3. Election and dismission of Board members. Election of president, vice-president, and board members. Each term is two years. The reelection of a board member in the same position is possible two times. The maximum membership in the board in a sequence will be 6 years. 
4. Election of the auditor (only every second year).
5. Decisions on changes of the bylaws and termination of the association. Changes of the bylaws must be accepted in an Assembly by at least 2/3 of the votes.
6. Decisions on changes of the guidelines. Changes of the guidelines must be accepted in an Assembly by at least 2/3 of the votes.
7. The definition and changes of the database
8. Termination of the association. At least 3/4 of the votes are needed.

19 Announcement of the Assembly of members

19.1
The Assembly of the association’s membership has to take place at least once every two year.

The Board has to ensure that the members are informed about the meeting by mail or e-mail  at least 30 days prior to the date of the meeting including the announcement of the agenda.

The period begins with the working-day following on the sending off of the invitation.

The announcement has to be sent to the e-mail address of the member that has been announced in a written form by each member. The agenda is determined by the Board.

20 Decision-making process by the Assembly of members and quorum

20.1
The Assembly decides on a chair of the Assembly meeting. The chair of the Assembly meeting must be a regular member of the association.

 20.2
Usually the secretary of the Association acts as the secretary of the Assembly meeting, unless the Assembly decides to nominate another member.

20.3
The minutes have to be taken on the decisions of the Assembly of the association and have to be signed by the chair of the meeting and the secretary. The minutes have to include the following information: Place, date of the meeting, name of the chair and secretary and the number of the members present at the meeting, the agenda, the decisions and the mode of voting. In case of changes on the bylaws the changed article has to be indicated.

 20.4
The Assembly is not a public meeting. The chair can admit guests. The Assembly has to decide on the admission to press, the broadcast network or TV.

 20.5
The mode of voting is decided by the Assembly. The voting has to be in a written form, if 1/3 of the members present insist on that. In personal elections the voting must be in a written form if at least one of the members asks for it.

 20.6
The assembly can take decisions only if the majority of the members (50% plus one) are participating or represented. Members can either participate to the assembly physically, being represented by one other member (after written authorization) or participate via electronic means (teleconference, online internet connection or email if accepted by the Assembly).

 20.7
The Assembly decides on proposals in general by majority of the valid votes; abstentions are not relevant. For changing the bylaws a two third majority of the valid votes is necessary, for the termination of the association a majority of 4/5.

 20.8
For elections of the Board members the following is valid: If no candidate has received a majority in the first ballot, a second ballot is performed between those two candidates, who have received the highest number of votes in the first ballot. If both candidates receive equal number of votes in the second ballot, the decision will be done by throwing a coin or a similar method that gives a 50/50 probability of being elected. In other voting issues (excluding personal elections), in case of equal number of votes, the vote of the President of the Association will be chosen valid.

21 Additional requests for agenda

21.1
Each member can apply at the Board in a written form, that additional proposals will be included in the agenda one week before the day of the Assembly of members of the association at latest. The chair of the meeting has to add those proposals to the agenda at the beginning of the meeting. The membership decides on the application of additional proposals to the agenda that may be initiated within the Assembly of the association. A 3/4 majority is needed to accept an additional application on that day.

21.2
Proposals for changes in the bylaws, changes of the database, changes of the guidelines, termination of the association as well as the voting and dismission of Board members can only be decided, if the application of that proposal has been announced to all members together with the agenda.

22 Extraordinary Assembly (EA) of all members

The Board can announce an extraordinary Assembly of the association at any time. It has to be announced, if the interest of the association demands an Assembly of the association or if the Board is demanded by a written form signed by 1/10 of all members indicating the reasons and purpose. The rules according to §§ 18, 19, 20 und 21 are applied accordingly in extraordinary Assemblies of the association.

23 Termination of the association

23.1
A proposal to terminate the association must be initiated by a vote of 2/3rds of the Board.

The proposed termination must be included in the agenda of an Assembly of the association and announced to the membership at least 30 days prior to the meeting. The association may be terminated if at least four fifths (4/5) of the votes at the Assembly are in favor of such termination (§20).

The president and the vice president are both to accomplish the liquidation if not decided otherwise by the Assembly of the association members. The same regulations apply accordingly if the association is terminated or dissolved because of other reasons or has lost its legal capacity.

23.2
If the association is terminated or has lost the non-profit purpose, all remaining assets (funds) and properties must be conveyed to the ESRS under the condition that it is to be used directly and exclusively non-profit for the narcolepsy and hypersomnia research. This regulation is effective only if the responsible tax office agrees or gives otherwise to recognize that there are no fiscal doubts regarding the non-profit character.

23.3
All belongings of the association will be transferred to the ESRS if the EU-NN e.V. loses its non-profit status. The data in the database still belong to the individual members and must be returned or destroyed if the member cannot be contacted

24 Currency of the association

24.1
The currency of the association is the Euro