AGORA | Governance/Bylaws
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Agora by Laws

1 Name

1.1 The name of the organization shall be Agora and is hereinafter referred to as Agora. It is a non-governmental, non profit organization registered in Greece, Athens with the code [18691/2011].

 

2 Aims

2.1 Provide member organizations representing people with Rheumatic and Musculoskeletal Diseases (RMDs) both in Southern Europe and borders and other peer user-led organizations that fall outside the Southern area (Eastern, Western and Northern Europe and generally within the area of Europe) with a stronger voice at a national and European level (please advice Appendix 3 for special conditions which apply to countries that fall outside of the geographical area of Southern Europe). The character of AGORA remains the same and focuses on working towards creating better conditions for people with RMDS in Southern European countries, despite giving the opportunity to countries that fall outside this geographical area to join the organization.

2.2 Encourage and assist in the foundation and development towards user-led organizations of people with rheumatic and musculoskeletal diseases in Southern Europe;

2.3 Promote supportive attitudes towards rheumatic and musculoskeletal diseases and enable patients to live independent and participate fully in society.

 

3 Objectives

3.1 Establish and promote a common agenda for health and advocacy for people with rheumatic and musculoskeletal diseases in Southern Europe and other areas (if the case) outside Southern Europe (special conditions apply to countries outside Southern Europe); the specific goals would be to reduce the burden of RMDs on the individual and society, to support the rights of people with RMDs to high quality information, education, care, treatment, rehabilitation, prevention and independent daily living, representing the interests of entire RMD community on European and national level.

3.2 Collect and distribute information on all aspects of rheumatic and musculoskeletal diseases, both in the medical and sociological areas of the disease.

3.3 Foster innovation and excellence in education and research with the aim to improve treatment and patient care.

3.4 Assist in improving the knowledge of rheumatic and musculoskeletal diseases among members of the health, welfare and medical professions, governmental bodies and the general public.

3.5 Encourage and undertake research projects including surveys and clinical trials related to rheumatic and musculoskeletal diseases and dissemination of the results of any such research.

 

4 Membership

4.1 Membership of the Agora is open to patient organizations from Southern European countries as defined by geographical criteria and according to the United Nations classification, providing support for people with rheumatic and musculoskeletal diseases. (See appendix 1) The annual fee for membership is 50 Euros.

4.2 The Agora membership is divided into two categories:
a) Full memberships: Full Agora memberships will be awarded to patient organizations which are in complete compliance with Agora’s Bylaws, aims and objectives and are classified as Southern European countries, as defined by geographical criteria and according to the United Nations classification.

b) Co-opted memberships: Co-opted memberships will be awarded to patient organizations which are in complete compliance with Agora’s Bylaws, aims and objectives, but are not classified Southern European countries, as defined by geographical criteria and according to the United Nations classification.

4.3 Membership of Agora is also open to patient organizations originating form countries that fall outside Southern Europe according to the United Nations classification; Agora will henceforth accept organizations that belong to this category as co-opted members. These organizations may be regional or national. This category of organizations will be accepted as Agora members under special conditions and will have restricted rights in the General Assembly meetings, as well as no voting rights. Agora Board will discuss the potential candidates and nominate the potential co-opted members to the General Assembly during the annual meetings. If the General Assembly does accept the candidate organization to become a co-opted member, the secretariat will provide an official letter of invitation. The annual fee for co-opted membership is 30 Euros. The annual AGORA Conference is open for participation by co-opted members up to one representative. The costs of participation will be fully reimbursed. Co-opted members will not have the right to host the Annual Agora Conference in their country.

Regular communication between AGORA and its member organizations is vital for achieving the aims and objectives on national and European level. Member organizations (full and co-opted) are asked to designate a liaison person who will act as the main contact for AGORA and the secretariat (for more see Appendix 4). Depending on the type of information or request the liaison person will share the message with the relevant people in the member organization as needed.

 

5 General Assembly (Membership Assembly)

5.1 The General Assembly consists of all member organizations of people with rheumatic and musculoskeletal diseases in Southern Europe.

5.2 The General Assembly is the highest decision-making body of Agora.

5.3 The General Assembly will be held once a year.

5.4 Each member is entitled to send a delegation to the annual General Assembly.

5.5 At the General Assembly each member is entitled to one vote, with the exception of the co-opted members, who will have the right to contribute in the General Assembly discussion strictly as observers, but will bare no right to participate in the voting procedure (for more information on co-opted memberships and their rights and responsibilities, please see Appendix 3)

5.6 At the General Assembly the delegation should have full power to make decisions on behalf of their organization.

5.7 Approval of the annual budget will require a two-thirds’ majority vote. All other decisions will be accepted on a majority vote of one.

5.8 The General Assembly is entitled to decide which organization will be a member according to the specifications of Appendix 1.

5.9 A special session of the General Assembly can be called by one third of the members of Agora or by the Board.

 

6 Administration

6.1 The overall control of the organization will be administered by a Board of five persons who are elected by the member organizations of the Agora. The work done by the Board members is voluntary work. They should meet the recommended criteria, including skills and experiences according to Appendix 2. The Board also acts as a “think-tank” developing patient perspectives and views.

6.2 The Agora Board is responsible for the everyday management of the organization. Part of the responsibility is the organization of the General Assembly, at least once a year, and the development of proposals for voting and election procedures to the General Assembly, such as Agora membership criteria, voting procedures for the General Assembly and Terms of Engagement for Agora Board members. The Chair must present a report on activities to the General Assembly every year.

6.3 All the members of the Board will serve a period of three years. They will be eligible for re-election according to the Agora’s By laws Appendix 2 but no more than three consecutive terms of office.

6.4 The Board will elect among themselves a Chairperson, a General Secretary (who will act as Vice-Chairperson in the absence of the chair), and a Treasurer.

6.5 The Board may decide on the appointment of dedicated staff persons who assist in the daily work of the Board and provide administrative and secretarial support or project management.

6. 6 The Secretariat will:

6.6.1 Be the custodian of the records of the organization.

6.6.2 Maintain record books in which official acts of the organization are entered along with any amendments.

6.6.3 Perform such other duties as may be determined from time to time by the Board.

6.6.4 Be responsible for all secretariat work and the correspondence of the organization.

6.7 The Treasurer shall receive contributions and prepare annual reports on behalf of the organization.

6.8 Board member may resign at any time by giving written notice to the organization. Any such resignation shall take effect upon the date of the receipt of such notice or at any later time specified therein.

6.9 The Board must authorise any expenditure that comes outside the budget approved by the previous Board Meeting and in case of urgent cases the Treasurer and the Chair will be given the permission to act accordingly. Members should be notified of these decisions.

6.10 If necessary the Board may appoint an auditor to report to the General Assembly.

 

7 Alteration of by Laws

7.1 Alteration to these By-laws shall receive the assent of the two-thirds of the Agora General Assembly. A resolution of the alteration of the By-laws must be received by the General-Secretary of the Agora Board at least 21 days before the General Assembly meeting at which the resolution is to be brought forward. At least 30 days’ notice of such a meeting must be given by the Chair of the Agora Board to all Agora members, and should include full information regarding the alterations

 

8 Dissolution

8.1 Agora may be dissolved by a resolution passed by a two-thirds majority of those present and voting at a Special Session of the General Assembly convened for the purpose of which 21 days’ notice is given to all Agora members. Such resolution may give instructions for the disposal of any assets held by or in the name of the Agora, provided that if any property remains after the satisfaction of all debts and liabilities such property shall not be paid to or distributed among the members of the Agora but shall be given or transferred to such other charitable institution or institutions having objectives similar to some or all of the objectives of the Agora as the Agora may determine and if and in so far as effect cannot be given to this provision then to some other charitable purpose.

These By-laws were approved at a meeting held in Malta, on 23rd September 2011 by delegates representing Southern patient organizations of people with rheumatic and musculoskeletal diseases from the following countries:

  1. Bulgarian Organization for Patients with Rheumatology Diseases
  2. Croatian League Against Rheumatism
  3. Cyprus League Against Rheumatism
  4. Hellenic League Against Rheumatism
  5. Association of Patients with Rheumatic Disease of Crete
  6. Arthritis and Rheumatism Association Malta
  7. Romanian League Against Rheumatism
  8. Association of Rheumatic Diseases Patients of the Republic of Serbia
  9. National Coordinator of Arthritis (Spain)
  10. Catalan Rheumatologic League

APPENDIX 1: Full Membership Criteria

Full Agora membership criteria

1.1 Full Agora member organizations should be non-profit and nongovernmental organizations.

1.2 Full Agora member organizations should be national or regional ones.

1.3 Organizations should represent rheumatic and musculoskeletal diseases.

1.4 They should be proven active on national level or regional level.

1.5 They should have shown an active contribution to previous Agora projects.

APPENDIX 2: Election Criteria for Board Members Requirements and Duties

Agora Board members

Requirements for skills and circumstances of Board Members

2.1 Agora Board members are elected by Agora members for a period of three years unless a board member resigns before the expiration of his/her term. In this case Agora members will elect a new person. Voting process in such an extraordinary case can be done also via email.

 

2.2 Requirements

2.2.1 The candidate should be officially nominated by the organisation of people with rheumatic and musculoskeletal diseases, which must be a member of Agora

2.2.2 The candidate should be actively involved in the national organisation or regional organization of his/her country, with experience in different fields of its work and if possible in the international area

2.2.3 The candidate must have personal experience of living with a rheumatic disease

2.2.4 The candidate should have internet access or at least regular access to these communication systems

2.2.5 Board members should not be working for pharmaceutical companies and other potential sponsors, occupy public offices or be members of political parties at a leading level because this situation could lead to conflict of interest.

 

2.3 Skills

2.3.1 To facilitate the communication between the Board members and other bodies a good oral and written working knowledge of English is required

2.3.2 Able to work in a team, and to take actively responsibility for certain working areas within the Board

2.3.3 Able to operate strategically

2.3.4 Presentation and negotiation skills*

*These skills are essential for the Chair.

 

2.4 Duties

2.4.1 Participation at the Board Meetings and General Assembly

2.4.2 Correspondence is done by email or tele-calls

2.4.3 Willingness and ability to attend project meetings within a core group and events the Board organises with third parties.

 

Note: In principle, the time Board members spend on Agora activities is not reimbursed. Costs for travel, accommodation and meals might be reimbursed. These rules have been developed to enable volunteers from member organizations of people with rheumatic and musculoskeletal disease with a difficult financial background to become a member of the Board and to prevent that financial difficulties hinder those to become active who otherwise might have joined.

APPENDIX 3: Co-opted Memberships Criteria

Co-opted memberships admission criteria

The criteria considered for selecting the organizations as co-opted members would be as follows:

3.1 Agora co-opted member organizations should be non-profit and nongovernmental organizations, which fall outside the geographical area of Southern Europe and borders.

 

3.2 Agora co-opted member organizations should be national or regional ones.

 

3.3 Agora co-opted member organizations should represent all / or more than two rheumatic and musculoskeletal diseases.

 

3.4 The co-opted members will have restricted rights and will be excluded from any voting procedures.

 

3.5 Agora co-opted members will have the right to attend the General Assembly and contribute in the discussions, however they will not bear the right of vote.

 

3.6 Co-opted members should be proven active on national level or regional level.

 

3.7 They should have shown an active contribution to previous Agora projects. / The co-option candidates need to have shown an active involvement/contribution in AGORA’s activities and projects, and/or the Task Forces and/or participated in the European lobby for the interests of all people with RMD’s.

 

3.8 Co-opted members’ representatives will not have the right to become Board members, as a consequence of their limited voting and decision-making rights.

 

3.9 The co-opted membership will have a term of three years. The AGORA BOARD will then evaluate the membership and if positive the co-option could be prolonged for another period.

 

3.10 Agora has the right to amend or alter any of the above terms and criteria concerning co-opted memberships.

 

3.11 All co-opted members will be offered the following opportunities:

3.11.1 Participation to the General Assembly meetings and discussions

3.11.2 Participation to Task Force groups

3.11.3 Participation to the AGORA Annual Conference program and dinner

3.11.4 Access to AGORA Annual Conference report

3.11.5 Information about all the AGORA activities

3.11.6 Access to all the AGORA projects and tools

3.11.7 Access to the AGORA network

 

3.12 Term of Office

The co-opted membership will have a term of three years. The AGORA BOARD will
then evaluate the membership and if positive the co-option could be prolonged for another period.

APPENDIX 4: Role Description of a Member Organisation’s Liaison Person

Role description of the liaison person

4.1 Liaison person is defined as the contact point between a member organization and Agora.

 

4.2 The liaison person will handle all the communications between the member patient organization he/she is representing and Agora. The communication may be regarding the participation of the organization in the Annual Agora Conference, the participation in Agora’s activities and projects, the briefing on the activities of this organization, the settlement of the annual membership fee, and other necessary communication that ensures the orderly conduct of Agora’s activities.

 

4.3 The liaison may be in direct contact with the Agora Secretariat.

 

4.4 The liaison person may be the Secretariat of the member organization or a person that is specifically assigned the role of the liaison person by the board of the member organization.

 

4.5 In case the liaison person is changed for any reason, the member organization is obliged to notify Agora in due time and introduce a replacement liaison in a reasonable period of time.

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