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Statute of the PCDH19 Suisse Association



Art. 1. Name, seat and duration


Pursuant to Articles 60 et seq. of the Swiss Civil Code and these by-laws, an association is hereby formed called the PCDH19 Suisse Association.


The Association is based in Lugano.


Its duration is unlimited.

Art. 2. Purposes


The PCDH19 Suisse Association is a non-partisan and non-denominational non-profit association that has the following purposes that can be carried out in Switzerland and abroad:

  1. promotion of medical and scientific research (through fundraising) aimed at the physical and/or mental health of people affected in particular by the PCDH19 genetic mutation;

  2. encourage the meeting of people affected by this genetic mutation and their family members with other people with the same disease, with doctors and researchers;

  3. collaborate with other organizations and associations in promoting, informing, and raising awareness among the public, physicians (pediatricians, neurologists, family physicians, ...), and health professionals about rare genetic diseases, in particular for PCDH19.

Art. 3. Means, social contributions


For the pursuit of the purposes, the Association shall have:

  1. social contributions;

  2. grants;

  3. any public and/or private contributions;

  4. donations, legacies, and other legacies;

  5. proceeds from initiatives or events.


Art. 4. Members



The Association is made up of members (individuals and/or legal entities) sharing the purpose of the Association and paying the social contribution.



Persons (natural or legal) who pay a donation equal to the sympathizer member's dues during the year, in addition to life members, automatically become members of the Association. For the purpose of counting the number of members who can attend the annual meeting, the count as of December 31 shall take effect.



Persons (individuals or legal entities) who have not renewed payment of dues or an equivalent payment as of December 31 lose their membership status.



The right to vote presupposes the payment of the social contribution.



Membership can neither be transferred nor inherited.



All members have the right to vote in the assembly, if for certain reasons a member cannot attend the social assembly, he/she can be represented by another person through a written and signed proxy.

Art. 5. Organs of the Association


The organs of the Association are:

  1. the Social Assembly,

  2. the Steering Committee,

  3. the Scientific Committee,

  4. the auditors appointed by the assembly.


Art. 6. Social Assembly



The supreme body of the Association is the social assembly. It consists of all the members of the Association. An ordinary social assembly takes place annually.


Members are invited to the general meeting in advance, with 20 days' notice, in writing (letter or email), with an agenda attached.



Proposals for further business for the attention of the general meeting must be submitted in writing to the Executive Committee within 2 weeks (14 days) of the date of the meeting.



The social assembly has the following duties:

(a) election, removal, and discharge of members of the Executive Committee,

(b) election or dismissal of auditors,

(c) drafting and amending bylaws,

(d) approval of the financial statements,

(e) determination of annual membership dues,

(f)  admission or exclusion of members,

(g) decision to affiliate with or disassociate from other associations,

(h) dissolution of the Association.



In the social assembly, every member has the right to one vote; decisions are taken with a simple majority of the voting members.

Art. 10 reserved Employees may attend the general meeting in an advisory capacity.


Art. 7. Extraordinary general meeting


An extraordinary general meeting may be called upon the request of the committee or 1/5 of the members of the Association.


Art. 8. The Executive Committee



The Executive Committee is the executive body of the Association.



It is made up of a minimum of 3 (three) persons.



Has decision-making powers over all day-to-day management of the Association.



The term of appointment is 1 year and may be renewed.


The committee shall designate from among its members a chairman and a secretary. The members shall bind the association with the collective signature rights of two.



Executive members do not receive honoraria; out-of-pocket expenses may be reimbursed.


Art. 9. Auditors


The accounts of the Association shall be submitted for audit to the two auditors appointed by the General Assembly.



Art.10. Modification of the purpose and dissolution of the Association



The modification of the purpose and the dissolution of the Association must be deliberated by the assembly, with a majority of 2/3 of the members present.



Upon dissolution of the Association, the assets shall go to an institution that pursues the same or similar purpose and that is tax-exempt. Remuneration of members' assets is excluded.



Art.11. Responsibility


Only the assets of the Association shall be liable for the debts of the Association. The personal liability of members is excluded.



Art.12. Final provisions



The provisions of the Swiss Civil Code shall apply to all matters not expressly provided for in these Articles of Association.


The Association may be registered in the Trade Register.

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