Currently, ICPF has more than 8,000 members from all around the world. Want to join us? Start here
Goals of ICPF
- To advance the care for cleft lip and palate patients, worldwide
- To strengthen care activity cleft lip and palate treatment through volunteer activity, charity missions and fund raising
- To hold a multidisciplinary international congress in order to facilitate mutual understanding
- To establish a network system of information exchange, regardless of fields and organisation
- Article One | Name
The name of this organization shall be the International Cleft Lip and Palate Foundation, hereinafter referred to as the Foundation
- Article Two | Purposes
The purpose of the Foundation shall be:
A. To contribute to public welfare by advancement of care for patients with cleft lip and palate, through volunteer activity, charity surgery missions and fund raising.
B. To take and hold by bequest, devise, gift, grant, purchase, lease or otherwise, either absolutely or jointly with any other person or persons or corporations for any of the purposes set forth in this Article, any property, real, personal or mixed. Or any undivided interest therein, without limitation as to amount or value, to convey, sell or otherwise dispose of such property, and to invest, reinvest and deal with the same in such manner as in the judgement of the trustees will best advance the purposes of the Foundation, subject to such limitations, if any, as are or may be prescribed by statute, but without and free from restrictions applicable to the trustees or trust funds.
C. To carry on the following education (literary, public, scientific and charitable) purposes or any of them, both directly and by the application of assets to the use of the Foundation exclusively for the promotion of educational (charitable, scientific or literary) purposes, or to any other corporation, trust fund or foundation whose purposes and operations are exclusively educational (charitable, scientific or literary).
(1) To promote the advancement of care for cleft lip and palate patients and of research therein, the diffusion of knowledge thereof, and the continuing education of health professionals.
(2) To have developed and presented institutes, lectures and publications devoted to cleft lip and palate.
(3) To cause to be published and to distribute papers, addresses, reports, treatises and other publications in the fields of education and science related to cleft lip and palate.
- Article Three | Organization
Section 1 – Incorporation
The Foundation is a non-profit organization established in Kyoto, Japan on October 23, 1997. It is specially provided in the event of dissolution or winding up of the Foundation all its remaining assets after payment of its liabilities shall be distributed to the Japanese Cleft Palate Foundation and that no part of its funds or property shall be distributed to, or among, its members.
20 dollars is required as as annual membership fee, but 25 dollar will be deducted from the registration fee for the Cleft 2004. If membership fees for 2003 and 2004 are paid in advance, you are also entitled to receive a special member’s discount of 50-dollar for the registration fees for the CLEFT 2004 in Halifax.
Section 2 – Membership
The membership of the Foundation shall consist of surgeons, orthodontists, speech pathologists, geneticists, pediatricians, anesthesiologists, prosthodontists, patients and family members of patients.
- Article Four | Government
Government of the Foundation shall be by the Board of Trustees as provided in Chapter III of the By-Laws.
- Article Five | Officers
Section 1 – Officers
The officers of this Foundation shall include a Chairman and a Secretary-General, each of whom shall hold the same position on the Board of Trustees from within its seven member board as provided in Chapter III of the By-Laws.
Section 2 – Appointive Officer
(A) The Secretary-Treasurer of this Foundation shall be appointed by the Board of Trustees and shall hold the same position on the Board of Trustees as provided in Chapter III of the By-Laws.
(B) A President shall be appointed for each World Congress.
(C) Workshops are chaired by Trustees and/or Executive Board Members who are outstanding exparts of related fields.
- Article Six | Annual Meetings and Congresses
Annual meetings shall be conducted as provided in Chapter II, Section 3 of the By-Laws.
- Article Seven | Amendment
The provision of this constitution may be repealed or amended by a majority vote of the Board of Trustees at a meeting of the Board of Trustees and that the notice of the proposed amendment shall have been included in the notice convening the general meeting and sanctioned by an affirmative vote of the general membership of at least two-thirds of the members at the meeting duly called for the purpose of such amendment.
- Chapter One | Corporate Seal
The seal, an impression whereof is stamped in the margin hereof shall be the seal of the Foundation. The seal of the Foundation shall remain in the custody of the secretary treasurer and shall be available for use by the chairman or the members of the Board of Trustees.
- Chapter Two | General Membership
A. Membership in the Foundation shall be limited to persons interested in furthering the objects of the Foundation and shall consist of anyone whose application for admission as a member has received the approval of the Board of Trustees of the Foundation.
B. There shall be only one class of membership and each member shall have the right to vote.
C. There shall be membership fees or dues only as directed by the Board of Trustees.
D. The annual or any other general meeting of the members shall be held at any place in the world as the board of Trustees may determined and on such date as the Trustees may shall appoint.
E. Notice of any meeting where special business will be transacted should contain sufficient information to permit the members to form a reasoned judgement on the decision to be taken.
F. At all meetings of members of the Foundation every question shall be determined by a majority of votes unless specifically provided by statute by these By-Laws.
G. Rules of Order win apply to all meetings of the Foundation.
- Chapter Three | Board of Trustees
Section 1 – Purpose
The Board of Trustees, hereinafter referred to as Òthe boardÓ shall act as a governing body of the Foundation. All trustees must be older than eighteen years of age, with power under law to contract.
Section 2 – Trustees
A. The board shall consist of seven Trustees and a Secretary-Treasurer.
B. The applicants for incorporation shall become the first trustee of the Foundation whose term of office on the Board of Trustee shall continue until their successors are elected.
Section 3 – Officers.
A. The Board of Trustees shall elect from within their number the chairman by majority vote. The out-going chairman will assume the position of past-chairman.
B. The secretary Treasurer shall be appointed by the Board of Trustees.
Section 4 – Duties
Chairman.
To serve as an official representative of the Foundation To preside at all meetings of the Foundation and of the Board of Trustees.
To fill any vacancy on the Board of Trustees not provided for in these By-Laws
To perform such other duties as may not be provided for in these By-Laws.
Secretary -Treasurer.
To serve as custodian of all monies, securities, and deeds belonging to the Foundation and he shall hold, invest, and disburse these subject to the direction of the Board of Trustees and perform such other duties as are specified by the Board of Trustees.
To co-ordinate all activities of the Foundation subject to established policy of the Board of Trustees of the Foundation.
Section 5 – Term of Office.
Each member of the Board of Trustees will be eligible to serve for a period not to exceed ten years in total.
Section 6 – Duties and Powers of the Board of Trustees
The Trustees of the Foundation may administer the affairs of the foundation in all things and make or cause to be made for the Foundation, in its name, any kind of contract which the Foundation may lawfully enter into and, save as hereinafter provided, generally, may exercise all such other powers and do all such other acts and things as the Foundation is by its charter or otherwise authorized to exercise and do.
To receive, hold, invest, allocate and distribute money or revenue from assets of the Foundation.
To appoint committees to assist in carrying out the work or the Foundation Executive Board Members may discuss the matters regarding the administration of the ICPF congresses and meetings, as representatives of each field.
Section 7 – Indemnification
Each trustee, officer and committee member, employee and other agent of the Foundation, shall be held harmless and indemnified by the Foundation against all claims and liabilities and all costs and expenses, including lawyerÕs fees, reasonably incurred or imposed upon him or her in connection with or resulting from any action, suit or proceeding, or the settlement or compromise thereof, to which he or she may be party by reason of any action taken or omitted to be taken by him or her as a trustee, officer or committee member, employee or agent of the Foundation in good faith. The right of indemnification shall be inured to such person whether or not he or she is a trustee, officer or committee member, employee or agent at the time such liabilities, costs or expenses are imposed or incurred and , in the event of his or her death, shall extend to his or her legal representative. To the extent available, the Foundation shall insure against any potential liability hereunder.
Section 8 – Meetings of the Board of Trustees
Meetings of the Board of Trustees may be held at any time and place to be determined by the Trustees.
Parliamentary authorities: Robert’s Rules of Order,, as most recently revised, shall be considered the authority for all parliamentary procedures for the conduct of meetings of this Foundation.
Vote Required: All actions or the Board or Trustees shall be decided by majority vote of the Trustees present at the meeting, except those actions which may require a different vote as provided in these By-Laws. Each Trustee is authorized to exercise one vote.
Quorum: A majority of the members of the Board of Trustees shall constitute a quorum at any meeting.
- Chapter Four | Financial Year
Section 1 – Financial Year
Unless otherwise ordered by the Board of Trustees, the financial year of the Foundation shall be the calendar year; January 1 to December 31.
Section 2 – Auditors
The members shall at each annual meeting appoint an auditor to audit the accounts of the Foundation for report to the members at the next annual meeting. The auditor shall hold office until the next annual meeting provided that the Trustees may fill any casual vacancy in the office of auditor. The remuneration of the auditor shall be fixed by the Board of Trustees.
- Chapter Five | Policies
- A. The Trustees shall serve as such without remuneration and no trustee shall directory or indirectly receive any profit from his position.
- B. The Board of Trustees may prescribe such rules and regulations not inconsistent with these By-Laws relating to the management and operation of the Foundation as they deem expedient, provided that such rules and regulations shall have force and effect only until the next annual meeting of the members of the Foundation when they shall be confirmed and failing such confirmation at such annual meeting of members shall at and from time cease to have any force and effect.
- C. In these By-Laws and in all other By-Laws of the Foundation hereafter passed unless the context otherwise requires, words importing the singular number or the masculine gender shall include the plural number or the feminine gender, as the case may be, and vice- versa, and references to persons shall include firms and corporations.
The activities of some doctors who participate in charitable operations in developing countries have led to a serious social problem known as safari surgery.
In many cases, this safari surgery is performed by doctors who are respected in their countries for their excellent work. Our group has conducted both charitable operations and technical transfer in many developing countries, primarily in the field of cleft lip and/or palate.
In some cases, doctors in developed countries visit developing countries to practise operations. In addition, these doctors are requested to perform specialized operations in these countries.
In most cases, they stay only to perform the operation without following up on the patient. This can result in complications in many of the patients. Thus, although these doctors are admired as humanitarians in their home countries, they are not as highly revered in the developing countries and may even be viewed as an intrusion.
Only doctors who are specialists in their countries should be invited to treat patients in these developing countries and should follow up on these patients for an appropriate length of time.
Many volunteer physicians come to developing countries, primarily at large hospitals. These hospitals tend to be quite antiquated, with a greater need for upgraded equipment than foreign doctors, because most of these hospitals already staff local doctors who have had advanced training abroad.
Based on these situations, we propose the following guidelines for medical humanitarian aid.
The Guideline
1. Along-term technology transfer plan is needed for charitable operations. A MOU (Memorandum of Understanding) between the local people and/or government and the volunteer mission is necessary when the visiting doctors perform operations, provide equipment and education.
2. Medical humanitarian aid, including cosmetic surgery, should not be profit-motivated. These projects should be carried out in a charitable spirit. Furthermore, these operations should not entail an additional financial burden to the host community.
3. Participants should fully understand the host country’s laws, customs and systems.
4. These charitable activities should not be religiously or politically motivated.
5. Surgeons should act as both teachers and practitioners.
6. Surgery should be performed in collaboration with the local doctors. This will allow more effective treatment and technology transfer.
7. We must take responsibility for the patients convalescence. We should also establish a plan of assistance for the patients independence.
8. The governing body of the organisation should maintain record of the volunteer participants professional license and personal history. Measures should be taken to ensure the health and safety of the volunteer participants.
9. A fund is needed for medical accident and/or travel insurance for the staff.
To establish charity operation information network with cleft and oral disease on the ICPF Web site.
Its purpose are:
- To exchange information among individuals and/or NGOs on the web (Bulletin Bord System).
- To collect data and information on how each country carries out its medical assistance to patients with oral and maxillofacial diseases.
- To enter the data obtained form the collections into the internet Web site operated by ICPF so that people who are interested in those data can get them from anywhere and any time.
- We propose that after ICPF the above data into the Web site, each medical team should be obligated to send the data obtained from its medical assistance activities to ICPF and ICPF should manage the database.
Introduction
Over the past decades, oral clefts have been the focus of numerous studies by both epidemiologists and geneticists.
At the present time, most studies suggested that 70% of cleft lip with or without cleft palate cases are non-syndromic. The remaining 30% are syndromic. Several Mendelian syndromes involving oral clefts have been mapped, such as Van der Woude syndrome, Treacher Collins syndrome, Waardenburg syndrome, and velocardiofacial syndrome. The study of non-syndromic cleft has been complicated by its inheritance pattern. It is depending on geographic origin, racial and ethnic backgrounds, and socioeconomic status. However, additional genetic linkage and association studies are now being used to identify these genetic factors. Thus it is important to work together to established the research organ.
Its missions are:
(a) To elucidate etiology of the diseases relating to cleft and to establish methods of therapies for those diseases
(b) To carry out international joint research for the benefit of patients under the auspices of a nonprofit organization.
The 2000 projects is as follows:
(a) The budget:
ICPF plans to pay total of 100,000 US dollars for the 2000 – 2004 project.
Those subsidies should not be used to cover the whole part of the research expenses at any time.
(b) The subjects of the research:
- Families who have one or more patients with a disease complicated by lower lip pits
- Families who have two or more patients with cleidocranial dysostosis
- Families who have multiple patients with CLP
Ethical principles:
This is one of the most important parts to solve before start. For example, the institution is guided by the ethical principles regarding all research involving humans as subjects as set forth in the report of the National Commission for the protection of Human Subjects of Biomedical and Behavioral Research entitled, Ethical Principles and Guidelines for the Protection of Human Subjects of Research.
Please contact us if any organizations and/or individuales are interested in the projects.