Internal rules of No Myolyse Association

 

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These internal rules determine the functioning and organization of the No Myolyse Association.

The bylaws provide a more detailed framework for the activity practiced and offer the possibility of clarifying essential elements of the organization of No Myolysis.

 

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- Article 1:

No Myolyse is an Association open to all, regardless of their status (natural or legal person), allowing a friendly relationship between all participants, respecting the personal beliefs of each participants.

The Association guarantees freedom and respect for the principle of non-discrimination, democratic functioning, transparency of its management and equal access, regardless of age, of women and men to its governing bodies.

No Myolyse respects the pluralism of ideas and remains open to all proposals....
 

The commitment is free and must be done for the benefit of the Association.

 

 

 

- Article 2 :

 

No Myolyse does not ask for any membership, its functioning is only possible thanks to donors and activities proposed by the association.
Active members of the Association are those who have adhered to the statutes and whose application has been accepted by the Board, either expressly or tacitly.

All persons making a donation will be considered as benefactor members of the No Myolysis Association.
 

The membership does not give the latter any advantage of any kind, other than the right to participate in the general assemblies and in the activities proposed by the Association.
 

No Myolyse wants to be a charitable organization and is committed to transparency by publishing an annual cash flow statement that will be posted on our website and can be consulted by each benefactor member.

 

 

 

- Article 3 :

 

No Myolysis is committed to promote, support, and disseminate, as far as possible, the progress of medical research on myolysis and related rare genetic diseases.

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- Article 4 :

 

No Myolysis is committed to bringing families together, helping them, their children, and their entourage to better understand and live with orphan genetic diseases.

We are listening to you, trying to support you, to orient you, giving you the necessary contacts and indications for a better management of the disease...

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- Article 5 :

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The resources of the Association are composed of:

 

• the contributions if applicable and the gifts or gratifications made

• possible subsidies from public structures

• the funds raised during events

• any subsidy that is not contrary to the laws in force

• manual donations received by any person whatsoever

• and in general, any other resources that the law authorizes.

 

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- Article 6 :

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The General Assembly gathers all the members of the Association.

The General Assembly shall meet when convened by the President or at the request of half of the members of the Association, within a period of fifteen days.

There is no quorum requirement for the holding of meetings.
 

The Ordinary General Assembly (OGA) decides by a simple majority of votes cast on:

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• the general orientations of the Association

• the activity report and the financial report

• the renewal of the members of the board

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Voting at the meeting is by show of hands, unless a member requests a secret ballot.

Voting may also take place remotely and/or by electronic means according to a modus operandi to be defined by the Board, the details of which will be attached to the notice of meeting.

 

 

 

- Article 7 :

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The President shall be the President of the Board and of the Association.

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The President shall be responsible for the day-to-day management of the Association. He/She acts in the name and on behalf of the Board and of the Association, and in particular:

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• He/She represents the No Myolyse Association in all civil acts and has all powers to commit it

• He/She is entitled to represent the No Myolyse Association in court, both as plaintiff and defendant

• He/She may, on his own initiative, institute all legal actions to defend the interests of the No Myolyse Association, agree to all settlements and make all appeals

• He/She convenes the general assembly and the board of directors, draws up reports and minutes, keeps the registers and executes the decisions

• He/She can, on his own initiative, open and close the Association's bank accounts, as well as any financial instrument

• He/She decides on the expenses

• He/She may delegate, in writing, his powers and signature

• He/She may take any emergency measure in the interest of the No Myolyse Association

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The Vice President is assigned the missions related to the Presidency of the association, as representative of the absent association leader. He is responsible for acting in place of the president in case of absence or impediment of the latter.

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- Article 8 :

 

The treasurer's duties include:

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• keeping the accounts of the Association

• organizing the collection of donations and issuing any corresponding tax receipts, particularly if the Association is recognized as being of general interest

• writing the financial report.

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The Secretary of the Association oversees the drafting of the various association documents:

 

• registers,

• minutes,

• declarations to the prefecture,

• convocations,

• minutes,

• etc…

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Beyond his administrative role, an important aspect of the Secretary's job is to act as a link between the different members and to ensure the cohesion of the office.

The Secretary of the association is also in charge of animating the community on the different communication supports (website, social networks, ...) notably in relation with associations fighting against rare diseases, in France and abroad.