Foundation Strategy

2nd amended version
approved by the Board of Trustees
in its 3rd session of 2003, 6/2/2003

Contents
1 Introduction
2 Background
3 Scope of Action
4 Core Tasks
4.1 Partnership of Help
4.2 Support and Services for the Partnership of Help
4.3 Fundraising
4.4 Management
5 Centres of Excellence and National Organisations
6 Basic Principles behind Voluntary and Honorary Work
7 Basic Principles of our Organization's Culture
8 Partnerships and Cooperation Arrangements
9 Finances

1 Introduction

This Foundation Strategy sets out in concrete terms the foundation's guiding principles and the general conditions under which these principles are to be realised. The foundation is set out for the long term (5-7 years) and shall also serve as a basis for other management instruments of the CCI. In addition, it shall also provide a firm yet flexible basis for the decision-making of the management bodies of the CCI, and for further planning. Its content shall be regularly reviewed to test its day-to-day effectiveness, and shall be amended as and when appropriate.

2 Background

Cleft lip and/or palate is one of the most common birth defect in the world. If left untreated, the lack of a separation between the oral and nasal cavity results in considerable difficulties in eating, breathing and speaking. On top of this, the cleft patient is also forced to endure the often severe and obvious facial disfigurement with each social interaction.

Today's state-of-the-art specialist treatment consists in the beginning of the initial diagnosis followed by adjustment of the palate immediately after birth where necessary. Ideally, the patient will be placed under the care of a closely nit team of specialists from various disciplines (consisting of a maxillofacial surgeon, orthodontic surgeon, orthodontist, ENT doctor, paediatrician, dentist, anaesthetist, speech therapist, audiologist, psychologist and social worker) up until the patient is fully grown at least. A treatment schedule is drawn up detailing the various surgical procedures and accompanying orthodontic treatment, speech and hearing therapies, and psychologist work. Some of the associated complications, such as stunted growth, only come to light after several years. This means regular follow-up treatment is a must. The kind of complex, interdisciplinary treatment of cleft lip and palate outlined above can only be provided by specialist centres. Only these centres can provide the kind of experience which comes from day-to-day work with such patients which is vital for the treatment of especially complex cases and to enable the revision and further development of treatment procedures.

Today, this kind of long-term comprehensive treatment from birth is only open to patients from countries having high medical standards. This treatment is denied to millions of people born in less developed countries. While the numbers of specialist treatment centres are relatively large in medically advanced nations, there are almost none at all in poorer countries. The reasons for this are twofold: Firstly, due to a lack of financial resources and infrastructure, and secondly on account of a lack of training and professional development opportunities for doctors coupled with deficiencies in communication and public education.

3 Scope of Action

Based on the above, the humanitarian work undertaken by CCI shall be based on the following scope of action:

  • To meet the necessary high standard of medical treatment places enormous demands on both the skills and knowledge of each and every member of the cleft and palate team and the strength of the team itself. Of utmost importance here is the ability of the different specialists to work in tandem, specialists such as general and orthodontic surgeons, speech therapists, paediatricians, anaesthetists, psychologists and nutritionists.
  • Both in-patients and out-patients must have access to specialist and qualified facilities which meet minimum requirements in terms of staff and infrastructure.
  • Continuous improvement of the treatment process is only possible with close contact and cooperation between specialists, well-structured research, and regular skills updates.
  • Cleft patients and their families have an enormous need for information which must not only be provided by knowledgeable specialists but also at regular intervals.
  • Treatment must be available free of charge if those affected cannot afford to pay for it themselves.

4 Core Tasks

Taking into account the Foundation's guiding principles and the realisation thereof, the CCI has decided to concentrate on the following 4 core tasks:

  • To establish Partnerships of Help between specialist Centres of Excellence (CoE's) around the globe. This shall enable an open exchange of know-how between hospitals, doctors and specialists, and also allow cleft patients to be treated locally. To help national organizations become fully autonomous in the future.
  • To support and promote the Partnerships of Help by providing targeted support and services.
  • To finance the foundation's work through ongoing fundraising activities that are carried out locally via the national organizations and coordinated worldwide.
  • To manage and coordinate its activities by way of a professional, efficient and lean system of management. To deploy volunteers in all areas of the CCI's work in the form of a central identity-forming element of such work.

4.1. Partnership of Help

The CCI's main task in the provision of local support is to set up Partnerships of Help between, on the one hand, specialist CoE's with knowledge and experience in treating cleft lip and palate, and on the other, hospitals open to development, in which the know-how needed to provide extensive, specialist treatment can be built up:

  • In the initial phase, local CoE's are given training and support through the ongoing and gradual transfer of know-how.
  • On the basis of such a solid foundation, they are developed to the point in which they are able to assume full responsibility for treating patients without needing constant support.
  • Ultimately, they will have the know-how and experience which will enable them to instruct other CoE's.

The Partnerships of Help encourage medical institutions to help themselves. They are both the initial instance and the main element of the ongoing support provided locally by the CCI with a view to developing these institutions into independent treatment providers. The purpose of each and every Partnership of Help is to create a CoE that is autonomous from a functional, technical and financial perspective. Ultimately, these should be able to ensure the provision of specialist treatment for cleft lip and palate in their country.

Partnerships of Help are set up worldwide, predominantly between CoE's in Japan, North America and Europe and CoE's in the developing and newly industrialized nations of Asia, Africa and Central and South America. After a period of cooperation, Partnerships of Help will also arise between developing- and newly industrialized nations.

The development work to set up Partnerships of Help and CoE is carried out gradually and with careful planning in each of the CCI's target countries. The result is a national work concept, outlined thus: It begins by determining what capacity is required to treat all new-born babies based on the incidence of cleft lips and palates. It then uses this information to calculate the numbers of CoE's required. This enables it to estimate the amount of time it will realistically take to realize the CCI's vision.

A national CoE with responsibility for the technical management of the network of CoE's shall be designated for each target country, either from the outset or after a probationary period.

Within the scope of this construction work, the CCI's national organizations assume increasing responsibility in developing and newly industrialized nations. On behalf and with the support of the CCI, they organize and coordinate the establishment of Partnerships of Help and the associated cooperation between the CoE's.

The Partnerships of Help usually receive financial support (one-off investments, payment of treatment and training costs and other directly related expenses) from the CCI for a maximum period of 5-10 years providing that the Foundation's financial resources allow for it.

As well as having the quality of their work checked, the Partnerships of Help shall also be subject to regular quality and financial audits, conducted wherever possible by external and independent experts.

Agreements with all partners involved shall be made in writing.

4.2 Support and Services for the Partnership of Help

The Partnerships of Help are established in order to enable the treatment of cleft lip and palate locally. As a result, long-term medical-humanitarian assistance can be secured for the cleft children of the world. In doing this, the CCI shall undertake the following work, and shall realise it gradually and within the potential of its human, organizational and financial resources:

  • Development of the Partnerships of Help
    The CCI shall initialise and coordinate the establishment of Partnerships of Help worldwide. In so doing, special baseline requirements shall be set.
  • Certifications
    The CoE's are chosen and accredited based on strict criteria.
  • Guidelines for medical-humanitarian aid
    Special guidelines are used to ensure humanitarian and medical aid meets clear ethical values and high medical standards.
  • Charity Operation Information Network (COIN)
    A number of different treatment records have been in use, none of which have thus far proven the most suitable. With this in mind, it is essential to carefully document each stage of treatment for each patient, including the results of this treatment. Suitable CLP data from around the world (operation reports, records, models, photos, course of treatment, etc.) is collated in a special web-based database and made available to the CoE's. COIN is not only used for quality control purposes but also training, comparison of methods, researching the causes of certain conditions and PR work.
  • CoE Network
    The systematic development and active maintenance of the ongoing exchange of know-how and experience between all registered CoE's worldwide.
  • Fellowships
    Arrangement of fellowships within the CoE's.
  • Further education and training sessions
    Deployment of qualified surgeons, orthodontic surgeons and other cleft specialists for theoretical and practical training sessions held at the CoE's, or external organizations, regular exchange of know-how between trainers.
  • Information and public education work
    To increase the awareness of specialists, governments, authorities and the public of what CLP patients have to endure and the importance of high-quality treatment and care. To assist the Partnerships of Help in educational work for the general public. Access to information is essential if medical institutions are to develop to the stage where they are able to operate independently. Therefore, it is vital to educate the population in less developed countries, where there are often misconceptions of the cause and significance of certain conditions. It is equally important to make the public in affluent countries more aware of the problem of untreated cleft lips and palates.
  • Services
    To acquire materials and medication for the CoE's at reasonable prices.

It is essential to support the development of viable structures within the target country right from the very beginning of the Partnership of Help in order to ensure later independence. The main aims of this programme are:

  • Management support
    To provide help and practical support in setting up the national organizations, their structures and management systems.
  • Fundraising Support
    To provide help and practical support to the national organizations in fundraising on a national level as part of the CCI's international fundraising programme.

4.3 Fundraising

To enable the CCI to raise long-term finance for the development work within the Partnerships of Help and the related support and services it provides, fundraising activities need to be ongoing in nature, must be coordinated worldwide and involve centrally managed instruments. For this purpose, the CCI has drawn up an international fundraising programme.

The CCI's national organizations in the donor- and target countries shall be active fundraisers in their countries. Legally responsible for the CCI's fundraising on a national level, they implement the international fundraising programme in their country as stipulated by and in close cooperation with the CCI. They are also responsible for contact with national authorities, organizations and private individuals. The CCI shall provide mostly logistical support for the fundraising efforts of the national organizations where required by centrally managed fundraising instruments that can be used worldwide. Where necessary, it also provides logistics support.

Through their fundraising activities, the national organizations in the target countries pursue the long-term goal of generating sufficient resources for the work of the CoE by themselves and reducing their reliance on funding from the donator countries as far as is possible.

The central fundraising database set up and maintained by the CCI is particularly important.

4.4 Management

4.4.1 Marketing

The CCI considers it a priority to have a creative marketing programme that can be planned and implemented systematically. The main aims of this programme are:

  • To consciously establish relations with the CCI's main exchange partners in a targeted manner.
  • To observe the basic principles of cooperation when carrying out the CCI's work.
  • To have a clear positioning of the CCI.
  • To have a uniform global identity comprising central elements (corporate design and corporate culture in particular); an established (and legally safeguarded) international charity brand (branding).
  • To establish a corporate identity supported and experienced by CCI and its partners.

As well as setting out the marketing measures for the foundation itself, the CCI's international marketing programme shall also set out how this programme can and should be furthered and implemented by the national organizations themselves. It shall also set out where additional marketing programme guidelines are needed for which areas of application (e.g. communication programme).

4.4.2 Main bodies

Whether CCI's development will prove successful depends on the extent to which it can responsibly implement its strategic and operational decisions through its own management powers.

The CCI is a foundation according to Swiss law. It is subject to supervision by the Swiss Federation.

The CCI is structured as follows:

  • A Strategic Management Body
    The Board of Trustees with a President and 8 other members. The Board of Trustees is the management body responsible for laying down the CCI's rules, regulations and strategy. Its members are people of integrity who are independent and who have good business, political and medical contacts. All members are able to drive forward the CCI's long-term development through strategic thinking and doing. They are prepared to actively support the foundation's interests within the scope of their powers.
    The Board is headed by the President. The President represents the foundation alongside the Managing Director. The President makes the decisions required on behalf of the Board of Trustees in the intervals between its meetings, and gives advice to the Managing Director.
  • Operative Management Body
    Managing Director, appointed by the Board of Trustees. The person assuming this role cannot be a member of the Board of Trustees at the same time.
  • Implementation Body
    Office established and run by the Managing Director. The Managing Director may also set up additional bodies where required or for special tasks.
  • Advisory and Specialist Bodies
    Commissions (committees), working groups, ambassadors, etc., allocated to a particular body depending on the task, do not have their own decision-making powers.
  • Regulatory body
    State-approved auditor, appointed by the Board of Trustees.

In addition, the following bodies shall apply, extant to the foundation's structure:

  • Basic bodies
    Centres of Excellence and national organizations.

The role of the Managing Director and office is assigned to a professional management partner agency which specialises in the management of non-profit organizations and who is qualified both to manage the foundation and to plan and carry out international fundraising activities and who can also provide the necessary stability and dynamism to the CCI.

The detailed duties and powers of the CCI bodies are regulated by the Regulatory body.

5 Centres of Excellence and the National Organizations

5.1 Centres of Excellence

Based all over the world, the Centres of Excellence (CoE) specialize in the treatment of cleft lip and palate conditions. As part of the Partnerships of Help, they ensure that know-how is exchanged between the hospitals, doctors and specialists involved and that cleft patients are treated locally. The Board of Trustees lays down the criteria according to which a cleft treatment centre is designated a CoE.

Know-how and experience is regularly exchanged between the CoE's worldwide. This allows contact to be retained with doctors and specialists in developing and newly industrialized countries and provides them with ongoing training. At the same time, the CoE's in industrialized nations benefit from discussing the cleft cases from poorer countries. Lower living standards and demographic trends make such cases more frequent and varied than in industrialized nations. This makes it possible to make constant improvements to the treatment procedures. The CCI shall systematically initiate, coordinates and support this exchange between its CoE's (worldwide network). The CoE's are also encouraged to meet regularly, such as at international congresses, which will enable them to share experiences, provide the CCI with feedback on the organization of the PoH and optimize their strategies.

5.2 The National Organizations

The CCI shall initiate and support the establishment of national organizations that are legally independent but are contractually affiliated to the CCI. These organizations are responsible for fundraising and public relations. The national organizations in developing and newly industrialized nations also take on an increasing amount of structural responsibility, organizing and coordinating the establishment of Partnerships of Help and the associated partnerships between the CoE's on behalf and with the support of the CCI.

The funds raised by a target country's national organization shall only be used in that particular country. The national organizations in the target countries are to constantly work towards becoming financially independent of the donor countries.

National organizations are called together by the board of trustees as and when necessary. They shall assume an advisory role with respect to the CCI's internal affairs.

6 Basic Principles behind Voluntary and Honorary Work

Voluntary service is a mainstay of the CCI. It assumes utmost importance within the Partnerships of Help, where CoE's and qualified specialists from the around the world make their enormous contribution. Volunteers play a similarly important role in international fundraising activities (ambassadors).

The CCI has to put in place suitable structures and procedures for voluntary service, outline responsibilities and provide management instruments. Voluntary service is not work performed as a favour. It requires reliability backed up by clear arrangements. The CCI's volunteers receive technical help and support and form an integral part of the organization. They should be insured for the work they do wherever possible and have their expenses reimbursed. A set of rules and regulations issued by the Board of Trustees governs voluntary service in more detail.

The Board of Trustees as well as the advisory and specialist bodies of the CCI work on an honorary basis. They may claim for expenses. A set of rules and regulations governs such expenses in more detail.

7 Basic Principles of our Organization's Culture

The CCI expects its humanitarian and medical aid to meet high standards. Everybody involved must comply with clear ethical values and meet the highest medical standards. The Board of Trustees shall issue special guidelines on such issues.

For one, the medical assistance provided to patients has to meet the highest technical and ethical standards. However, the CCI must also meet high standards in all other areas as well. Therefore, the Board of Trustees is also tasked with drawing up the CCI's general ethical guidelines and carrying out periodical checks to ensure that they are being carried out.

8 Partnership and Cooperation Arrangements

The CCI aims to enter into partnerships and cooperation arrangements with other medical and humanitarian aid organizations. It may join related organisations and umbrella associations.

Documents outlining the basic principles and guidelines of international development aid organizations and other supranational organizations are regularly used in the course of the CCI's work.

9 Finances

9.1 Fundraising

The amount spent on fundraising must not exceed 20% of revenues over the medium term.

9.2 Use of Funds

When it comes to using funds, priority should be given to financing the Partnerships of Help, i.e. the treatment of cleft patients. All other outgoings in connection with the CCI's work are to be considered of lesser importance. The available funds should be used economically and prudently.

The amount spent on primary services (Board of Trustees, management, advisory bodies, the office's administrative work, etc.) is not to exceed 10% of revenues over the medium term.

The CCI aims to build up modest but sufficient capital reserves in order to protect its freedom to act as it wishes and to safeguard its projects.

9.3 Management Instruments

The CCI uses the following management instruments among others:

  • Income statement: Annual budget and annual accounts (cost centre and cost unit accounts), mid-year accounts
  • Annual balance sheet
  • Statement of cash-flows
  • Medium-term projected earning accounts
  • Medium-term budget
  • Ongoing liquidity planning
  • Financial reports from the national organisations
  • Commentaries

The accounting methods must meet the standards set out in the Guidelines published by the Swiss national monitoring agency for fundraising organisations (ZEWO). Efforts will be made to acquire ZEWO certification status. Additional guidelines and management instruments shall be set out by the Board of Trustees in a financial programme to be drawn up at a later point in time.

The President of the Board of Trustees:
Prof. Dr. Dr. Dr. Hermann F. Sailer

The Managing Director:
Erica Schwob