Approximately 10% of newborns are born too soon, and about 1% of newborns are born before the 32nd week of pregnancy. These preterm infants have a high risk of developmental disorders, severe mental and physical disabilities, attention deficit disorders and learning difficulties. Former preterm infants are also highly vulnerable to later health problems such as an increased susceptibility to infection. Babies born at term may also develop health problems before and during birth (e.g. stroke, oxygen deficit) with lifelong consequences.
The situation is an enormous challenge for the children concerned and for their parents on a physical, emotional, and also on a financial scale. There is a need for effective organization, assistance and support for the children and their families.
Doctors and scientists are faced with a dilemma in that improvements in intensive care have reduced neonatal mortality, but there has been no concomitant reduction in consequential problems such as neurological disorders. There is an urgent need for new approaches to improve neonatological intensive care and develop new diagnostic and therapeutic measures to protect and promote the brain. Researchers and neonatologists must contend with the lack of a lobby for children in society as a whole, and for newborns in particular. The medical care invested for one additional year of life for a newborn is a mere fraction of the corresponding sum for an adult. At 10%, preterm births account for a large share of total births. More than half of the population of preterm infants with a very low birth weight have various forms of disability. Nevertheless, this issue is barely reflected in national and private (pharmaceutical industry) research funding, compared with the amounts spent on the "major diseases of civilization" such as high blood pressure and heart attack in adults. Public interest in the care of neonates and preterm infants also pales in comparison with the attention devoted to childhood cancer (with an incidence of 1:25000 of all cancers versus 1:100 for extreme preterm births).
There is a need for targeted lobbying for newborns and support for experimental and clinical research, the establishment of quality standards and training opportunities for medical professionals to improve neonatal care, prevent preterm births, and support the parents and children concerned.
This Foundation has been initiated by parents' associations, scientists and the founders.
Name, legal position, headquarters
The Foundation is called "European foundation for the Care of Newborn Infants (EFCNI)." It is a civil-law public foundation having legal capacity, with its headquarters in Munich, Germany.
Purpose of the Foundation
(1) The purpose of the Foundation is
1. to ensure the best possible care for newborns and support for their parents and
2. to promote the research and performance of measures intended to prevent or avoid preterm birth.
(2) The purpose of the Foundation shall be achieved in particular by the following measures:
by providing a platform initiating Europe-wide activities to improve neonatal care and coordinate local, national and European activities
by supporting local, national and European parents' associations and promoting the establishment of such initiatives
by providing understandable and readily accessible information for parents before, during and after a preterm birth
by generating awareness for the issue among the public, social insurance providers and other government institutions
by providing a discussion platform for ethical issues concerning preterm births, care and prevention
by establishing and coordinating a scientific advisory panel for interdisciplinary, transnational, experimental and clinical research to improve the care of premature and sick newborns
by establishing and coordinating a political advisory panel to secure long-term public awareness for the issue
by promoting the training and further education of all medical, nursing and social professions involved in the (after)care of premature and sick newborns in Europe
by promoting effective preventive measures to reduce the incidence of preterm births
by promoting the improvement of the community care of premature or sick children after discharge from hospital.
These measures will be completed successively and depending on the resources available.
(3) Hence, the Foundation is exclusively and immediately devoted to charitable purposes as defined in the "tax-relieved purposes" section of the fiscal code.
(4) The Foundation may provide other tax-relieved bodies, institutions and foundations or a suitable public authority with financial or material resources provided those agencies use these resources to promote the measures pursuant to section 2.
(1) The Foundation is altruistic. It is not primarily devoted to securing its own economic viability. It may not benefit legal or natural persons with disbursements that are not in line with the purpose of the Foundation or provide them with unusually high funding, bestowals or remunerations.
(2) Beneficiaries of the Foundation have no legal entitlement to benefits from the Foundation on the basis of this Charter.
(1) The endowment property shall be maintained on a permanent basis and shall not be diminished. It amounts to €50 000 in cash.
(2) Contributions to the Foundation (additions to the endowment property) are allowed. Contributions with no stated purpose on the basis of a last will and testament may be added to the endowment property.
Resources of the Foundation
The Foundation shall perform its duties
1. from the revenues of the endowment property,
2. from bestowals, provided they are not stated by the donors as being for the purpose of adding to the endowment property; § 4 (2) (2) applies notwithstanding.
(2) All resources may be used only for purposes in accordance with this Charter.
(3) Reserves may be accumulated if and for as long as required in order to meet the tax-relieved purposes under this Charter, and provided that specific purposes and times exist for the use of the reserves. Surplus revenues exceeding administrative expenses may go to maintain the value of the endowment property in accordance with fiscal terms and provisions.
Statutory organs of the Foundation
(1) Statutory organs of the Foundation are
1. the Executive Board of the Foundation
2. the Board of Trustees.
The activity of the Foundation's organs shall be honorary. Any expenses incurred shall be reimbursed. The Board of Trustees may determine an appropriate lump sum to cover the material and time expended by the members of the Executive Board of the Foundation. To secure fulfillment of the purpose of the Foundation in day to day operations, the Board of Trustees may vote to appoint a member of the Executive Board or a Secretary to work full-time. In either case, the Board of Trustees shall determine a suitable fee which shall expressly not be paid out of the revenues from the endowment property but from other sources (e.g. sponsoring agreements).
Executive Board of the Foundation
(1) The Executive Board of the Foundation is composed of three members with a term of office of four years. These shall initially be appointed by the founders when the Foundation is set up, thereafter appointed for a period of four years by the Board of Trustees.
The Executive Board should be composed of
a representative of a national or European parents' association for neonates or preterm infants - in any case an affected parent,
a representative of a national or European neonatology-perinatology medical association (e.g. Union of perinatal and neonatal societies) - in any case a doctor, and
a person freely elected by the Board of Trustees.
Any exceptions to the above shall be approved unanimously by the Board of Trustees.
If an Executive Board member leaves before the end of a term of office, the new member shall be appointed only for the remainder of the term of office. Re-appointment is allowed. A person leaving the Executive Board shall remain in office – at the Board of Trustees' request - until a successor has been appointed.
(2) The Executive Board shall appoint one of its members to be a Chairperson and one to be a deputy chairperson who shall represent the Chairperson in all matters in the Chairperson's absence.
Representation of the Foundation, duties of the Executive Board of the Foundation
(1) The Executive Board of the Foundation represents the Foundation before the courts and out of court. The Executive Board has the powers of legal representative. Two members of the Executive Board of the Foundation shall represent the Foundation jointly in such cases.
(2) The Executive Board of the Foundation is empowered in lieu of the Board of Trustees to issue urgent directives and conduct business transactions that brook no delay, provided relevant feedback is not obtained from the Board of Trustees within 24 hours of launching a written circular voting procedure. The Executive Board shall notify the Board of Trustees no later than at the next meeting.
(3) The Executive Board of the Foundation shall conduct day-to-day administrative procedures in accordance with the Board of Trustees' guidelines and resolutions. The Executive Board is bound to administer endowment property and other resources conscientiously and economically. The duties of the Executive Board are in particular
to draft the Foundation budget proposal
to present proposals for the use of revenues from the endowment property and any sums donated for use
to compile a report on fulfillment of the Foundation purpose and to give an account of the revenues and outgoings of the Foundation and of its assets (§ 9 subs. 1 clause 2).
(4) The terms of §12 of this Charter apply mutatis mutandis for the conduct of business by the Executive Board.
Management, fiscal year
(1) The Executive Board of the Foundation shall keep records and collect receipts pertaining to the revenues and outgoings of the Foundation. A report on fulfillment of the purpose of the Foundation and accounts of revenues and expenditure and of the endowment property shall be drawn up at the end of each fiscal year.
(2) The Executive Board of the Foundation shall have the Foundation audited by an auditor or other agency authorized to issue an equivalent confirmation in the event of the endowment property. The audit must extend to the preservation of the endowment property and the use in accordance with this Charter of the Foundation's revenues and any monies donated for intended use.
The fiscal year is the calendar year. The year of establishment of the Foundation is hence a short fiscal year, ending on December 31, 2008.
Board of Trustees
(1) The Board of Trustees has five members. These are appointed for an initial term of five years by the founders upon establishment of the Foundation. Thereafter, the Board of Trustees shall extend its number by electing further members with a period of office of five years. If a member leaves before the end of the appointed term, the replacement member will be elected only for the remainder of the period of office. Re-election is allowed. A person leaving the Board shall remain in office – at the Board of Trustees' request – until the replacement has been elected.
(2) No more than two members of the Board of Trustees may be members of the Executive Board of the Foundation at the same time.
(3) The Board of Trustees shall elect from among its number a chairperson and a deputy chairperson who represents the Chairperson in all matters in the latter's absence.
Duties of the Board of Trustees
(1) The Board of Trustees makes decisions in all fundamental matters and advises, supports and supervises the Executive Board of the Foundation in its activities. The Board of Trustees in particular votes on
the budget proposal, see § 8 subs. 3 item 1,
use of revenues from the endowment property and any monies donated for use, see § 8 subs. 3 item 2,
annual accounts and calculation of net worth, see § 8 subs. 3 item 3,
the appointment of an auditor or firm of auditors, see § 9 subs 2,
appointment of members of the Executive Board
formal approval of the Executive Board's actions
modifications of the Foundation charter and applications for conversion or dissolution of the Foundation.
(2) The Chairperson of the Board of Trustees represents the Foundation in legal transactions with the Executive Board of the Foundation or individual members of the Executive Board.
Conduct of business by the Board of Trustees
(1) The Board of Trustees shall be convened by the Chairperson as needed, but at least once a year, giving the agenda and 8 weeks' notice prior to a scheduled meeting. Meetings shall also be convened if 2 members or the Executive Board so demand/s. The entire Executive Board may attend Board of Trustee meetings, and is obliged to do so at the Board of Trustees' demand.
(2) The Board of Trustees has a quorum if the meeting was properly convened and more than half the members, including the Chairperson or deputy chairperson, are present or, with the chairperson or deputy chairperson present, at least one third party is connected for the duration of the meeting and in full knowledge of all documents on the agenda by telecommunications media (e.g. telephone). Summoning errors are considered remedied if all the members concerned are present and none of them object.
(3) The Board of Trustees makes all decision unless a case according to § 13 applies – with a - simple - majority of the votes issued. In the event of a tie, the chairperson or the deputy chairperson has the casting vote.
(4) If no members object, resolutions may be done in a written circular voting procedure. The written form is fulfilled by telex, fax, email, or other documentable transfer of vote in electronic form. This does not apply to decisions under § 13 of this Charter.
(5) Records must be kept of the results of meetings and resolutions in circular voting procedures and signed by the Chairperson and or Secretary. They must be drawn to the attention of all members of Foundation organs.
Charter amendments, conversion and dissolution of the Foundation
(1) Amendments to the charter are allowed provided they seem necessary as a means of adapting to changing circumstances. They must not impair or cancel the Foundation's tax relief status. If they might have implications for the Foundation's tax-relief status, they must be submitted to the competent financial authority for comment.
(2) Amendments of the purpose of the Foundation are allowed only if its fulfillment becomes impossible or circumstances change to the extent where fulfillment of the purpose of the Foundation no longer seems apposite. Conversion and dissolution of the Foundation shall be in accordance with legal requirements.
(3) Resolutions pursuant to paragraph 1 above require the consent of 4 members of the Board of Trustees. Resolutions pursuant to paragraph 2 above require the consent of all members of the Board of Trustees. The resolutions come into effect only after approval by the Government (§ 15).
In the event of dissolution of the Foundation or cessation of its tax-relieved purposes, the remaining property shall fall to charitable foundations or organizations chosen by the majority of the incumbent Board of Trustees.
These foundations/organizations shall use it directly and exclusively for pro bono publico / charitable / pro bono publico and charitable purposes, in line with the purpose of the Foundation.
Supervision of the Foundation
(1) The Foundation is subject to the supervision of the Upper Bavarian Government.
(2) The supervisory authority for the Foundation shall be informed without delay of any changes in address, representation authorization, and constitution of the organs.
The Charter enters into force upon recognition of the Foundation by the Government of Upper Bavaria.