Statutes

Resources - How to start a patient association: Statutes

Statutes need to be written in order to register an association. PHA Europe has written some statutes that can be used as a template. However, remember to double check the requirements of statutes in your given country before adjusting the template.

Here is the template:

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Articles of Association

1. Name, Registered Office and Field of Activity

(1) The association shall go by the name of
(2) Its registered office is in and its activities shall consist of .

2. Aims

(1) The association, whose activities are not aimed at making a profit, has as its aim the support and education of patients suffering from pulmonary hypertension.
(2) At the same time a discussion and information basis is to be created for doctors, also with a view to possible research initiatives to improve the diagnostic investigation and therapy for this illness.

3. Means of Achieving the Aims of the Association

(1) The aim of the association shall be achieved through the non-material and material means set out at paragraphs 2 and 3 below.
(2) Non-material means shall include: meetings, lectures and gatherings, bringing together those affected, information about diagnostics and therapy of pulmonary hypertension.
(3) Primarily the necessary means should be raised through support from pharmaceutical firms and from other sponsors, yet to be acquired, as well as through voluntary, private donations.

4. Types of Membership

(1) The members of the association are divided into ordinary members, extra-ordinary members and honorary members.
(2) Ordinary members are those, who are involved in the work of the association. Extra-ordinary members are those, who are members, but do not get involved in the work of the association. Honorary members are persons who are appointed as such by a resolution of a general meeting, as recognition for special services to the association.

5. Becoming a Member

(1) Membership of the association is open to everyone.
(2) The final decision regarding acceptance of ordinary and extra-ordinary members lies with the council
(3) A membership application may be refused without having to provide reasons.
(4) Honorary members are proposed by the council and appointed by the general meeting.

6. Termination of Membership

(1) Membership expires upon the death of a member, upon a member leaving voluntarily, upon deletion and upon expulsion.
(2) The expulsion of a member from the association can be decreed by the council in the event of blatant breach of members’ duties, as well as in the event of dishonourable behaviour. An appeal to the general meeting against the expulsion is permitted. All membership rights shall lie dormant until such a decision by the general meeting.

7. Rights and duties of Members

(1) Members are entitled to partake of all events organised by the association, and to make use of the association’s facilities.
(2) Only ordinary and honorary members shall be entitled to vote at general meetings, and only they shall have active and passive voting rights.
(3) The members are beholden to put their best efforts into furthering the interests of the association, and to refrain from doing anything that could damage the reputation and the aims of the association. They shall observe the articles of association and the decisions by the officers of the association.

8. Organs of the Association

(1) The organs of the association shall be the general meeting, the council, that auditors and the arbitrating body.

9. The General Meeting

(1) An ordinary general meeting shall take place every year, within the first three months of the calendar year. An extraordinary general meeting shall take place within six month, where it is called by the council, by the ordinary general meeting on the basis of a written, reasoned motion by at least one third of the members or by the auditors.
(2) Both in the event of ordinary and extra-ordinary general meetings, all members shall be invited by way of written invitation at least 2 weeks prior to the meeting date. The calling of a general meeting shall include the agenda. The convening of the general meeting shall be done by the council.
(3) Valid resolutions can only be made in relation to the agenda, with the exception of a motion to call an extra-ordinary general meeting.
(4) All members are entitled to attend the general meeting. Only ordinary members and honorary members shall be entitled to vote. Legal person can be represented by a duly authorised person.
(5) The general meeting shall be quorate if half of those members entitled to vote are present. In the event that the general meeting does not reach a quorum by the appointed time, then a new general meeting shall be convened, which shall then be quorate with such number of members eligible to vote as attend that meeting.
(6) The elections and resolutions in the general meeting shall generally be decided by a simple majority.
(7) Resolutions intended to change the articles of association or to cause the dissolution of the association need a qualified majority of two thirds of the votes validly cast.

10. Scope of Functions of the General Meeting

The following tasks are reserved to the general meeting:

  • Receipt and approval of the report and statement of accounts.
  • Appointment and divestiture of members of the council and the auditors.
  • Awarding and withdrawal of honorary memberships.
  • Resolutions regarding amendments to the articles of association and the voluntary dissolution of the association.
  • Deliberation and passing resolutions with regard to other matters on the agenda.

11. The Council

The council consists of the chairman and his deputy, the secretary and his deputy, the treasurer and his deputy, as well as three advisors. In the event of an elected member leaving, the council, which is elected by the general meeting, is entitled to appoint another electable member in his place.
The operating term of the council shall be two years. In any event it shall continue until a new council is elected.
Retired members of the council can be re-elected.
The council is convened by the chairman, or, in his absence, by his deputy, either in writing or orally.
The council is quorate when all members were invited and at least half of them are present.
The council reaches decisions by simple majority; in the event of a tie the person presiding has the casting vote.
The chairman shall preside over council meetings, in the event of the chairman not being present, the vice-chairman shall preside. If neither the chairman nor the vice-chairman are present, then the meeting shall be presided over by the oldest member of the council, whereby this refers to the actual age of the council members, not their length of time on the council.
The general meeting can divest either the entire council or single members thereof at any time.

12. Scope of Functions of the Council

The council is responsible for the leadership of the association. It deals with such tasks as are not allocated by the articles of association to another organ of the association. In particular the following matters fall into the remit of the council’s responsibility:

  • Preparing an annual estimate, as well as the composition of the report and statement of account.
  • Preparation of the general meeting.
  • Convening the ordinary and extra-ordinary general meetings.
  • Managing the assets of the association.
  • Admission, expulsion and deletion of members.
  • Appointment and sacking of employees of the association.

13. Particular Obligations of Individual Members of the Council

The chairman is the highest official of the association. Together with the secretary, and in financial matters together with the treasurer, he is responsible for representing the association in public, in dealings with authorities and third parties.
The chairman presides both at the general meeting and in council meetings.
The secretary shall support the chairman in the execution of the association’s business. He is responsible for keeping the minutes of the general meetings and of council meetings.
The treasurer is responsible for the orderly management of the association’s financial affairs. In the event of their being unavailable, the chairman, the secretary and the treasurer shall be represented by their deputies.

14. The Auditor

(1) The two auditors are elected by the general meeting for a term of two years.
(2) They can be re-elected.
(3) The auditors are responsible for the ongoing supervision of business dealings and the scrutiny of the statement of accounts. They shall report their findings resulting from such scrutiny to the general meeting.

15. The Arbitrating Body

An arbitrating body shall be responsible for deciding any disputes arising out of the relations with the association. The arbitrating body shall consist of five ordinary members of the association. It shall be formed as follows: each party to the dispute shall, within seven days, nominate two members to the council to act as arbitrators. These shall elect a chairman of the arbitrating body. Where there is a tie, a lot shall decide between those proposed.
The arbitrating body shall reach its decision in the presence of all its members by a simple majority. It shall decide to the best of its knowledge and in all conscience.
Its decisions shall be final within the association.

16. Dissolution of the Association

The voluntary dissolution of the association can only be resolved at an extra-ordinary general meeting, convened for this specific purpose and only with a majority of two thirds of the votes cast.
This general meeting shall also decide about the liquidation, if the association has any assets.

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Registration

It is important that a new association is correctly registered as a non-profit organization in your country. Some countries have decided to be part of a bigger association (e.g. heart and lung associations) while most become an association on their own.

Scientific Committee

In order to have medical credibility, it is important that a scientific committee is establish together the new association. One PH doctor might be sufficient and help review information published online, brochures, etc.

Business plan

To ensure direction and sustainability, a simple business plan should be created. This outlines the goals of the association, planned activities, funding needs, and how resources will be used over time. When starting a new patient association, it’s important to have a clear idea of what you want to achieve and how you plan to […]

Website/Facebook/Forum

Most patients are active on Internet. A new association needs to have an online presence, and PHA Europe can help. They can set up both a web page, Facebook page and an online forum for the new association. This is a simple procedure that requires that a template is filled in with country specific information.

Brochure

It is important to have a brochure describing the association. This can be distributed by, among others, PH nurses to newly diagnosed patients in order to inform them of the existence of the association.

First patient meeting

PH is a rare disease and patients seldom meet other patients. It is therefore especially important that a patient meeting is organized. This should be done as soon as possible after the new association is established.
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