NAME AND SEAT
1. The foundation bears the name: Stichting UPPMD Data Foundation.
2. The foundation is seated in Zeist, Netherlands.
1. The foundation has as its purpose:
Worldwide collaboration between Duchenne Parent organisations in order
to enhance the understanding of the course of DMD/BMD, the effects of
treatments, the needs and preferences of DMD/BMD patients and all other
aspects relevant to the lives of DMD/BMD patients.
2. The foundation will in particular devote itself to the realisation of this task
by way of the following goals:
a. Collect data from PROs, PROMs, PMR etc in a data collection hub;
b. Integrate worldwide sources of information for DMD such as
databanks, biobanks and registries in one unified environment;
c. Provide solid and safe information to parents, clinicians, regulators and
d. Promote and support research;
e. Develop tools for better use of existing data.
1. The committee of the foundation consists of at least three persons, the first
committee will be established by this deed. The number is determined by
2. The members of the committee are appointed by the Committee for a
period of three years; they are immediately eligible for re-election.
The functions of the committee members, including that of the chairman,
treasurer and deputies, are decided upon by the committee.
COMMITTEE TASK AND REPRESENTATION
1. The committee is entrusted with fulfilling the business of the foundation.
2. The committee is authorised to enter into all agreements.
The foundation is represented by the committee as well as by two members of
the committee jointly.
1. The committee meetings are held as often as the chairman, or two members
of the committee deem necessary.
2. The committee decides by majority vote in a meeting where at least two
thirds of the number of committee members is present.
3. The committee has the right to make decisions without a meeting, provided
all committee members declare themselves in favour of the proposition
TERMINATION OF THE MEMBERSHIP OF THE COMMITTEE
The membership of the committee terminates:
a. by the expiration of the term of office.
b. by resignation.
d. by dismissal upon the decision of the Committee.
FOUNDATION YEAR – ANNUAL REPORT AND ACCOUNTS AND
1. The foundation year runs from January first up to and including December
2. Within six months of the expiration of the foundation year the committee
shall issue an annual report of the past financial year and the accounts.
3. Approval by the Committee of the accounts and report absolves the
The financial means of the Foundation are obtained from contributions of the
members, gifts of sponsors, testamentary dispositions, legacies, subsidies,
other contributions and benefits from property.
RULES AND REGULATIONS
The Committee decides on the rules and regulations which cannot contain
stipulations that are contrary to these articles of foundation and in which
arrangements are made that are necessary or desired in the view of the
AMENDMENT TO THE ARTICLES OF FOUNDATION
1. Amendment of these articles of association can only take place by a
decision of the Committee, which has been called with the announcement
that an amendment of the articles of association will be proposed there, a
copy of the proposed amendment must be included.
2. A decision to make amendments to the articles of foundation needs a
majority of at least three quarters of the number of votes cast by members
of the committee.
1. Dissolution of the foundation can be resolved upon by the Committee.
2. What is stipulated in article 12 applies here likewise.
3. A decision for dissolution should also contain:
a. Appointment of a commission of liquidators, consisting of three
b. appointment of the means to cover a possible liquidation deficit
c. a possible liquidation surplus should be allocated in accordance with
the purpose of the foundation mentioned in article 2.
In all cases not covered by these articles of foundation or the rules and
regulations, or where there is disagreement concerning the foundation