STATUTES
OF THE
OSTEOGENESIS IMPERFECTA FEDERATION EUROPE

1. PREAMBLE
The name of the Federation shall be Osteogenesis Imperfecta Federation Europe (OIFE), hereinafter called "the Federation", an independent body whose membership shall be open to any bona fide organisation concerned with Osteogenesis Imperfecta as detailed in the by-laws. It shall be governed by an Executive Committee, hereinafter called "the Committee". Its principal business meeting shall be an Annual General Meeting, hereinafter called "The AGM", which may also incorporate a conference or symposium. 

2. SEAT OF THE FEDERATION
The legal seat of the Federation is Eindhoven, The Netherlands.
The Committee chooses a convenient location for the office of the Federation.
The legal seat and the location of the office do not have to coïncide.

3. OBJECTIVES
The objectives of the Federation shall be:
3.1
To represent the interests of its members at a European level.

3.2
To collect, publish and exchange information on OI.

3.3
To represent the problems with OI to national or supranational organisations with the intention that they may be recognised and their treatment facilitated in programs of public health.

3.4 
To promote research, surveys and investigations on the causes, treatments and effects of OI and publish the useful results of such research.

3.5
To promote public awareness of all aspects of OI.

3.6
Generally to do, or cause to be done, all things lawfully necessary to implement, promote and achieve the above aims and objectives of the Federation. This shall be deemed to include appealing for, and raising funds.

4. MEMBERSHIP
4.1 Members
Membership shall be open to any bona fide organisation as specified in the 

Preamble, provided that it is non-political, non-religious and subscribes to this statute and by-laws, or amendments of these. The member categories are detailed in the by-laws.

4.2 Obligation
The obligation of membership shall be to share in the work of accomplishing the Federation's objectives. A yearly membership fee will be due, the amount of which is detailed in the by-laws.

			4.3 Delegates
Every member appoints one delegate to the AGM. This delegate will be fully mandated to act on behalf of the member that is represented.

4.4 Suspension
A member organisation shall be suspended from membership if, after due investigation and appeal, one or both of the following conditions is/are met:
4.4.1	the Committee considers its membership to be detrimental to the Federation,
4.4.2	the member is more than one year overdue in paying its membership fees.
A member that has been suspended loses its voting rights and any outstanding reimbursements may be cleared with fees due.
The delegate of this member will also be suspended from the Committee, in case this applies.

	4.5 Reinstatement or expulsion
The Committee shall propose the reinstatement or expulsion of a suspended member to the next AGM.
The AGM will decide with a two thirds majority of the votes. The counting of the votes will be according to the rules laid down in the by-laws.

4.6 Withdrawal
No member organisation may withdraw from the Federation without giving prior notice to the Committee of its intention to do so. Its withdrawal shall not be accepted until all financial obligations arising out of its membership have been fulfilled.

5. THE BOARD
The Board of the Federation is constituted by the delegates as per paragraph 4.3. The Board is the highest decisive body of the Federation.

6. MEETINGS
6.1 Annual General Meeting (AGM) 
The AGM of the Federation shall be its principal business meeting. Its time and place shall be as recommended by the committee. The Committee shall endeavour to rotate its location and ensure that its conference or symposium program covers the spectrum of Osteogenesis Imperfecta. An AGM must be held in each calendar year.

	6.2 Extraordinary General Meeting (EGM)
Any four members shall be entitled to requisition an Extraordinary General Meeting, hereinafter called EGM, of the Federation bij written notice to the Committee stating the exceptional business to be dealt with. Upon such receiving notice, the Committee shall call an EGM to be held not less than four month from the date of the receipt of the requisition. The agenda shall state the names of the members concerned and the business to be dealt with. The Committee shall decide on its venue and be responsible for its organisation.

6.3 Calling an AGM
The Committee shall have the power to call the AGM and propose the theme for any attendant conference or symposium. It shall also have the power to invite guest speakers, observers and visitors. These persons may observe and contribute to its business discussions but are not allowed to vote on any issue.

7 EXECUTIVE COMMITTEE
7.1 The Committee
At an AGM the Board appoints, according to the rules detailed in the by-laws: a president, a vice-president, a treasurer, and at most two other officials. Together they form the Executive Committee, henceforth to be called the Committee.

7.2 Responsibilities and duties
The Committee shall handle the day to day affairs of the Federation and report to the Board. The duties of the Committee members are detailed in the by-laws.

7.3 Assistance
The members of the Committee may obtain assistance from volunteers. These volunteers can be invited to the AGM as visitors according to paragraph 6.3.
The members of the Committee remain personally responsible for any actions of volunteers on their behalf. This also applies to expenses.

8. COMMITTEE OF RECOMMENDATION
A Committee of Recommendation can be formed according to the rules detailed in the by-laws.

9. ADVISORY BOARD
An advisory panel of acknowledged specialists in the field of OI may be set up, according to the rules detailed in the by-laws, to assist the Federation's understanding of any aspect of OI.

10 FINANCE
10.1 Financial Year
The Federation's Financial Year shall run from January 1st to December 31st, 

except for its inaugural year when the Financial year shall run from the date of the inauguration of the Federation to December 31st of the following year. 

10.2 Expenditure
	10.2.1
			All reasonable expenses, as defined by the Committee from time to time and 
			incurred by travel or work for the Committee, shall be paid for from the general 
			funds of the Federation when available, on approval of the treasurer.
	10.2.2
			The treasurer will not reimburse the expenses of a delegate of a member whose 
			fees are overdue without the approval of the Committee.

	10.3 Financial Report
The treasurer shall prepare a financial report for the year ending on the preceding 31st December in advance of every AGM. It will be issued with the agenda and requires the approval of the Board.

10.4 Income
Each member organisation shall pay its agreed fee by 1st April in each year. The Committee shall endeavour to secure donations and sponsorship from other sources.

10.5 Budget
All Federation expenditure shall be within an annual budget authorised by the Board.

10.6 Commitments
No member shall commit the credit of the Federation in any way whatsoever without the written approval of the Treasurer.

10.7 Liability
It must be expressed as a term of every contract entered into on behalf of the Federation that its funds alone are to be held liable for any debts, obligations or engagements incurred or entered into, and no representative or official of the Federation is to be under any personal liability in respect thereof.

10.8 Conflict of interest
Any member of the Board, the Committee or any sub-committee having any direct or indirect financial interest in any organisation with which the Federation anticipates dealing, shall make a full disclosure of such interests  and, if required by the Board, withdraw immediately.

11.  ANNUAL REPORT
At each AGM the Committee presents a report on the activities of the  Federation during the preceding year. This report should, if possible, also contain contributions from the members. The yearly report will be attached to the agenda for the AGM and will be send to the members. The AGM will decide on the approval of the activities.

12 STATUTE
12.1
These Statutes may be amended by a resolution passed by a two-thirds majority of delegates present at an AGM or EGM, provided that all the delegates entitled to vote at such a meeting have been notified by the the Committee of the proposed amendment in writing at least three months prior to the date of the meeting.

12.2
Unless the AGM decides otherwise by a 2/3 majority, any duly adopted alteration to the Statute shall take effect from the close of the AGM/EGM at which the amendment was adopted.

13. DISSOLUTION
13.1
Notice of any Federation AGM/EGM at which a resolution for its winding up is to be proposed, shall contain full particulars of the Committee's proposals regarding the distribution of its assets. Any such resolution shall be binding if passed by a two-thirds majority of votes of those present and entitled to vote at such a meeting.

13.2
Whenever there will be less than four members of the Federation it will be dissolved according to the ruling in paragraph 13.1.

			13.3
When appropriate European legislation becomes available the Board may decide to dissolve the Federation, according to paragraph 13.1., with the sole purpose of reinstating it under these new European laws. In this case all assets will be transferred to the new Federation.

     			13.4
The AGM at which a dissolution of the OIFE is decided shall also determine how the financial balances will be dealt with.

13.5
The AGM will come to a decision (as defined under the previous point of the statutes), determining the destination of any surplus money, the AGM will seek a destination in line with the goals of the OIFE as much as possible, or any other general good cause (ANBI)"

These Statutes were approved at the inaugural meeting of the Federation in Northampton, England on 30th September 1993 by the following delegates representing their respective OI Societies:

Pierre Verhaeghe,	 France
Ute Wallentin, 		 Germany
Rob van Welzenis, 	 The Netherlands
Morna Wilson, 		 Great Britain
Kati Wink, 			 Finland
Marcella Zingales,  	 Italy
Article 13.5 had to be added in December 2007 to qualify for the “ANBI”-status, the status of a charity, in the NL.