European Congenital Heart Disease Organisation is registered in Belgium (registration number 821.091.637). It was established by collabration of 26 Congenital Heart Disease organisation's all over Europe. 


Constitute of the European Congenital Heart Disease Organization

  1. The name of the Association is: European Congenital Heart Disease Organization.
  2. The abbreviated name is: ECHDO.
  3. ECHDO's registered office is located in the Brussels-Capital Region, at Borrensstraat, 51, 1050 Elsene, Belgium.
  4. The Association is governed by the Code of companies and associations.
  5. All legal proceedings will be conducted in accordance with Belgian Law. Official documents will be drawn up in Dutch or French, as required by law.
  6. The working language of ECHDO and all Members is English.



1. The purpose, aims and objectives of ECHDO are to

  • improve the treatment and quality of life of patients with Congenital Heart Disease (CHD) by information on appropriate medical, surgical and psychosocial therapies, in particular regarding long-term outcomes and unifying statistical methodology;
  • integrate paediatric and adult cardiac treatment, and in particular to install and provide a smooth “transition” for adolescents from paediatric to adult;
  • promote and sustain scientific and medical research in all fields of CHD;
  • represent the interests of CHD patients in national and European health policy;
  • raise public awareness of CHD and to instill in the public an understanding of the concerns of people with CHD;
  • improve the safety of treatments for children and adults;
  • advocate European regulations for off-label use and special treatment needs (i.e., paediatric).

2. A cross-European standardized and appropriate CHD therapy is needed. A European, if not worldwide, exchange of scientific information based on multicentred, multinational research (i.e., to prevent repetitive studies) is needed to avoid stress and suffering for people with CHD. Therefore, ECHDO may offer training and information and arrange programs with the goal of an exchange of experiences for people with CHD and specialists, such as doctors, nurses, teachers, etc. In order to reach its objectives, ECHDO works in close co-operation with other national, European and worldwide organizations, groups and institutions.

2.1 ECHDO promotes unprejudiced presentation of CHD-related issues in public and aims to improve their situation in society.
2.2 ECHDO is politically and religiously neutral.
2.3 (A). ECHDO will solely pursue charitable aims according to Belgian taxation regulations.
2.3 (B). ECHDO is a charitable, non-profit organization.
2.3 (C). All proceeds and possible profits of ECHDO will be spent solely according to these Statutes.
2.4 Upon termination of ECHDO, all proceeds will go to a charity organization with similar aims to ECHDO, determined by the General Assembly (see Article 17).



The financial year coincides with the calendar year.



1. Members of ECHDO will usually be national or regional legally-recognized associations of people with CHD, parents, patients' organizations and related healthcare organizations represented by persons chosen locally (hereinafter referred to as Representatives). The Members are committed to the vision of ECHDO as set out in Article 2 of these Statutes. The Board will make decisions on membership issues including new Members during the year.

a) Member organizations/associations need to be national or regional.
b) Member organizations/associations need to have access and need to have the possibility to cooperate with the main health centers in the relevant country.
c) Member organizations/associations should reflect the numbers of people with CHD in their respective country.

2. Membership of ECHDO is of three kinds:

A. Active membership (a patient or family CHD organization, but at all times Members who have paid their membership fees pursuant to Article 5 below),
B. Associate membership (a patient or family CHD organization and other NGOs, who have not necessarily paid their membership fees),
C. Honorary membership (Doctors and other professionals who can contribute to the richness of the debate).

3. The right to vote in a General Assembly is limited to the Active Members. The right to vote in the General Assembly is therefore suspended if a Member fails to pay its membership fee for the respective year in which such General Assembly takes place.

 4. The Board of Directors will keep a register showing the names and addresses of the Representatives of the Members of ECHDO. Each Member must appoint one person as its Representative and must inform the Board of Directors of this in writing. The Member must notify the Board of Directors immediately in writing of a change of Representative.

5. The right to vote can be transferred in written form, including by email or fax.

6. All Members have the right to propose motions to the General Assembly in written form. Associate and Honorary Members have the right to speak and to introduce motions at a General Assembly, but they do not have the right to vote.

7. All Members have the right to participate in internal communication of ECHDO, unless information from third parties is restricted by confidentiality agreements.

8. Members shall not share in any fiduciary profit and shall not be otherwise compensated for their capacity of being a Member, from any proceeds of ECHDO. No person shall be reimbursed for any expenses that do not meet the aims of ECHDO, or are disproportionately large.

9. Representatives can be paid standard compensation and fees for services rendered if these services are not directly related to their quality as Member Representatives (i.e., counseling, advising).

10. Members or their Representatives do not receive shares from any proceeds of ECHDO on termination of membership or of ECHDO.



1. The Members are obliged to pay a membership fee to ECHDO. The level of the membership fee is determined by the General Assembly once a year. The payment date of the membership fee shall be determined and circulated to the Members, together with the circulation of the minutes of the General Assembly in accordance with Article 13.

2. The Board of Directors has power in special cases to grant full or partial exemption from the obligation to pay a membership fee. Such full or partial exemption remains subject to the discretion of the Board of Directors at all times.

3. Membership fees will be based on an adjustable sliding scale according to the financial limits of the local Member being an organization/association. In some cases (when there is a new Member or an especially financially limited one) the membership fee can be waived by the Board of Directors while maintaining full voting rights.



1. Membership ends:

a. on resignation by the Member;
b. on dissolution of the Member group;
c. if ECHDO ceases to exist;
d. by disqualification of the Member;
e. by revocation of the membership of the Member followed by a decision of termination.

2. Resignation by the Member is subject to four weeks' written notice.

3. Termination of membership in ECHDO is effected by the Board of Directors. This can be done if a Member has ceased to fulfill the requirements for membership or if they otherwise do not comply with obligations towards ECHDO. Termination of membership by the Board of Directors takes place with immediate effect.

4. Disqualification from membership is imposed by the General Assembly. This can only happen if a Member acts contrary to ECHDO’s Statutes, regulations or resolutions, or harms ECHDO’s interests in a purposeful manner. Disqualification causes membership to end immediately.

5. The Board of Directors can suspend a Member due to any of the above-mentioned reasons. A suspension that is not followed by a decision to terminate the membership within three (3) months of the decision of suspension, ends on the expiry of such period.

6. With termination of membership all claims resulting from the membership relation are withdrawn.

7. Any Representative who becomes a contracted employee of ECHDO will automatically be replaced as Representative by the local organization or association from which they come for the duration of their period of employment.

8. No Representative shall vote on any financial matter that might result in a potential advantage for themselves, their family, or the association it is a member of. Any such Representative (or Member) must declare its interests in advance of such a vote. Failure to declare interests may result in the vote being invalidated.

9. Any change of membership status must be notified to the Member within one month by registered post. The Member has the right to object to the change and demand to be heard at the next General Meeting.



1. Members of the Board of Directors (hereinafter referred to as Board Members) are elected by the General Assembly. Member being organizations/associations are not elected. Only physical persons representing them can be elected. The number of Board Members is determined by the General Assembly, but the Board consists of minimum five and maximum nine persons. The Board of Directors will at all times be composed of at least one person representing an association(s) of parents and one person representing an association(s) of ACHD (Adult with Congenital Heart Disease).

2. Candidates for the Board can be nominated by any Member or Member organization/association, including Board Members.

3. Membership to the Board is limited to one person per country. However, if the Representatives of associations of parents and adults fall within a different category (i.e. representing either parents or adults), in such case, and only in such case, the membership of the Board is open to several persons per country, which each will need to fall within a different category (i.e., representing either parents or adults). In the case of co-optation (Articles 9.10 and 9.11), this article 7.3 is suspended.



1. A Board Member stands down:

a. on giving notification of resignation in writing;
b. as a result of the expiry of the term for which they were appointed; or
c. as a result of loss of capacity on the basis of which they were elected or appointed.

2. In the event of a Board Member's absence or inability to act, the other Board Members are charged with carrying out the absent Board Member’s duties. If one or more Board Members are absent, the remaining Board Members form a competent Board. Vacancies must be filled no later than the next General Assembly.

3. A Board Member may be suspended from the Board by a unanimous vote of all other Board Members upon failing their legal and/or constitutional duties. All ECHDO Members must promptly be informed of such measure.

4. The Board or a Board Member may be replaced during the period of office by simple majority of the General Assembly, provided that notice of such motion has been given at the time of invitation. If a motion to replace the Board of Directors or a Board Member arises spontaneously during a General Assembly, a 2/3 majority of votes of those present is necessary for the motion to pass.



1. The Board of Directors must keep an updated database containing the names and addresses of all Board Members. Board Members are obliged to inform the Board immediately of any relative changes.

2. All Board resolutions will be adopted by a simple majority of the votes cast. Abstentions, although recorded, are not counted. The Board is at quorum when at least half of its members are present. In case of a tie vote, the vote of the President of the Board is decisive.

3. The Board must appoint the following persons:

  • a President (duties include the conduct of the Board of Directors),
  • a Vice President (The President may delegate their powers in written form to the Vice-President for a defined period in case of their temporary absence (i.e., illness or vacation). The Vice-President takes over the powers of the President in case of the President’s inability or termination of membership of ECHDO),
  • a Secretary (portfolio includes general administration, communication systems, as well as duties towards the Register of Legal Entities at the business court),
  • a Treasurer (whose portfolio includes financial administration, book-keeping according to the law and tax regulations, and collection of memberships fees), and other such officers as it considers desirable, from the other Board Members.

4. Minutes of the proceedings of each meeting must be taken by the Secretary or some other person designated by the Board, and signed by the President and Secretary after they have been approved by the Board.

A. The first meeting of the newly elected Board must be held within four weeks of the election and minutes taken and presented in Dutch or French as well as English. These minutes will include the results of the internal elections and must be offered for registration to the Register of Legal Entities at the business court.

5. An officer may be represented at a meeting by a fellow officer, if agreed in writing by both officers.

6. If all Board Members agree to such procedure, the Board can adopt written resolutions and written decisions without holding an actual meeting. All officers can in such situation express their views on the motion concerned in writing, including electronically.

7. Invitations to a meeting of the Board must be given verbally, by phone, or in writing by post, fax or email at least one week in advance, and must include an agenda. If it seems necessary during a meeting of the Board, a subsequent meeting can be called for within 48 hours, if all Board Members agree to this procedure.

8. Board Members are elected by the General Assembly according to an approved protocol. The period in office for Board Members is three years. They stay in office until their successors have been duly elected. A Board Member may be elected for a maximum of two consecutive periods in office. There must be a period of 6 months out of office before being re-elected as a Board Member. The General Assembly can differ from the election and re-election periods, and thus agree to more consecutive periods in office, in case no other candidate-board-members have been presented.

9. In order to provide overlapping periods, the General Assembly may extend the period in office of one-third of the Members of its first Board once to 4 years and one-third of them to 5 years.

10. In the case of extraordinary circumstances, where no existing Board Member is able or willing to accept special duties which were not provided for at election time, the Board may co-opt any Board Member for the express purpose of fulfilling these duties. This co-optation ends at the next General Assembly.

11. If Directors withdraw from office between two General Assemblies, the Board will be allowed to reconstitute itself to the original number of members elected at the General Assembly (i.e., co-optation as described above). All Members of the Associations will promptly be informed of such a measure. The period in office of a substitute director will end at the next General Assembly. When more than 50% of the Board Members are replaced in this way, a General Assembly must be called within 6 months.

12. The Board is in charge of all affairs of ECHDO unless stated otherwise provided in the Statutes, or by decision of the General Assembly. All powers not assigned by law or these Statutes to other bodies, are vested in the Board.

13. The Board must decide on its own rules of operation, including the rules needed to enable employment contracts. These rules must be laid down in writing (in the by-laws) and notified to the membership.

14. Minutes are to be taken of all meetings of the Board. These minutes are to be communicated to the Members within 1 month.



1. Legacies in favor of ECHDO can only be accepted by the Board if the estate is not deficient.

2. Provided it has the approval of the General Assembly, the Board has power to enter into contracts to acquire, dispose of and encumber property subject to registration and to enter into agreements by which ECHDO binds itself as guarantor, whether jointly or severally, guarantees the performance of a third party or provides security for a debt of a third party.

3. A Board Member will not receive payment for his or her Board work.

4. A Board Member's expenses will be reimbursed, unless the Board decides otherwise in specific cases.



1. ECHDO is represented by the Board in and out of Court. It can also be represented by the President and/or Vice President along with any one of the other officers. No Board Member may legally represent ECHDO alone. Individual Board Members may act on their own, with due observance of the imposed limits and within the boundaries of their responsibilities and agreed budgets within the Financial Protocols of ECHDO. These powers are not transferable.

2. The Board may delegate the representation of ECHDO both in defined and explicit areas, as in all areas, to other Board Members, to a designated employee or Member or Representative, or to third parties under the responsibility of a specific Board Member. The Secretary of ECHDO will deposit the necessary documents about this appointment when applicable at the clerk’s office of the business court.



1. The Board is obliged to keep records of the financial position of ECHDO and of everything concerning its activities, in accordance with the requirements arising from these activities, and to keep the books, documents and other data to clarify ECHDO’s rights and obligations.

2. The General Assembly elects one (or more) Internal Auditor/s and determines its/their Budget. The period in office of the Internal Auditor/s is 15 months from the start of the following financial year, with an overlap of 3 months overlapping with the newly elected Internal Auditor/s.

 2 (A). It is the task of the Internal Auditor/s to comment and advise upon all financial related matters of ECHDO.

2 (B). The Internal Auditor/s has the right to examine the cash and bookkeeping of ECHDO. They need to be accountable to the General Assembly. They are not subject to orders from the Board and cannot be employee(s) of ECHDO. They may not be a Board Member, nor may they be members of any Group appointed by the Board.

2 (C). The annual report of the Internal Auditor/s must be sent by post, fax or email to the Members, that are invited to the General Assembly pursuant to Article 13 below, together with the invitation to the General Assembly, 4 weeks in advance of such General Assembly

2 (D). Relations between the Internal Auditor/s and the Board of Directors are subject to a separate protocol on Internal Auditing.

3. When required by law and within the legal limits, supervision of the Association is entrusted to one or more statutory auditors, appointed by the General Assembly for a renewable term of three years.



1. The General Assembly of ECHDO shall consist of one Representative from each Active Member (see Art. 4). In order to validly deliberate, at least two Active Members should be present or represented at the General Assembly (the “Presence Quorum”). The Associate and Honorary Members can attend the General Assembly, but their presence is not required to meet the Presence Quorum.

2. The General Assembly shall convene annually, which will be held not later than six months after the end of the ECHDO calendar year.

3. Each General Assembly must be recorded in minutes, signed by the minute taker. When required by law, minutes may be drawn up in Dutch and/or French.

4. The minutes have to be circulated to the Members within six weeks after the General Assembly.

5. Changes to the Statutes, changes in the Board, as well as the Minutes of the first meeting of the Board of Directors after its election have to be deposited at the clerk’s office of the business court within the legal period.



1. The General Assembly is convened by the Board of Directors. Meetings must be convened in writing by sending notices to the addresses (which can be interpreted as e-mail addresses) of the Members as shown in the membership register. Such notices can be send by post, fax or email and, in addition, can be published on the website of ECHDO. The notice period must be at least four (4) weeks before the event.

2. The items that will be dealt with at the meeting must be specified in the convocation notice.

3. All Representatives of Active Members have the right vote in meetings. Any Active Member can arrange for their vote to be cast by another Active Member, by authorizing such Member to do so in writing (“proxy”).

4. Resolutions are adopted by a simple majority of the votes cast, unless otherwise contravened in these Statutes (the “Decision Quorum”). Blank votes, although recorded, are considered as not having been cast.

5. Active Members (Articles 4.2 (A) and 4.3) are the only Members have full voting rights. Both Associate Members and Honorary Members, while being able to fully take part in the debates and issues, are not able to vote.


Article 15. BY-LAWS

1. The ECHDO By-laws contain additional detailed arrangements regarding the regulation and the activities of ECHDO. By-laws must not contain any provisions contrary to Belgian law or the ECHDO statutes.

2. The By-laws are adopted and altered by the General Assembly. The provisions of Article 16 concerning changes to the Statutes apply to the adoption of and changes to these By-laws. The last version of the By-Laws were adopted on 7 April 2012.


1. No change can be made to ECHDO’s Statutes other than by a resolution of the General Assembly convened for that purpose with a notification that a change to the Statutes will be proposed at it.

According to the Code of companies and associations, any modification of the purposes or activities of the Association needs to be approved by Royal Decree. The articles concerning the general assembly and the articles concerning the conditions for modifying the statutes, the conditions for dissolving and liquidating the Association and the allocation of its assets and liabilities must be recorded by authentic deed according to the Code of companies and associations.

2. At least five days before the General Assembly a copy of the motion setting out the proposed change word for word will be available electronically, distributed by the Board of Directors, for inspection by the Members and their Representatives until the General Assembly.

3. These provisions apply as well to any decision to merge or divide ECHDO.



1. ECHDO can be dissolved by a decision of the General Assembly. The provisions of Article 16 apply.

2. In the event of a dissolution with liquidation, ECHDO will continue to exist after dissolution to the extent necessary for the liquidation of its assets. Documents and announcements sent by ECHDO must contain the words: "in liquidation".

3. The officers are the liquidators of ECHDO’s assets. They continue to be subject to the provisions concerning the appointment, suspension, dismissal and supervision of the officers. During liquidation the other provisions of the Statutes also remain in force as far as possible.

4. The credit balance after liquidation will be used for those purposes to be determined by the General Assembly, which are in keeping with the objects of ECHDO.

5. Individual Board Members will not be held fiscally responsible and will be covered by titles of the Insurance Policy governing ECHDO.".