1.1 The name of the Federation will be :

and registered in Brussels, Belgium


2.1 The aim of the Federation is to support people with Scleroderma by promoting the
advancement of knowledge, research and information in the field of Scleroderma within
medical, governmental, and social arenas, and by increasing awareness of the disease
among the general public.


3.1 To collect and distribute information on all aspects of Scleroderma, both in the medical
and sociological areas of the disease.

3.2 To foster excellence in education and research with a view to improving treatment and
patient care.

3.3 To assist in improving the knowledge of the disease for people with Scleroderma and
among members of the health, welfare and medical professions, and governmental bodies.

3.4 To encourage and/or undertake surveys, research projects and clinical trials related to
the disease, and the publication of the results of any such research.

3.5 To strive to establish parity of treatment and knowledge across Europe among people
with Scleroderma.

3.6 To promote awareness and recognition of the disease to the general public throughout

3.7 To gain representation on any European or international body whose interests could be
of benefit to members of FESCA.

3.8 To do all such other lawful things as are necessary for the attainment of the above


4.1 Membership of FESCA is open to all the National Patient Organizations in Europe
providing support for people with scleroderma.
The Federation may also consider admission to countries near Europe.

4.2 Each member organization will be entitled to send a Delegation to the Meetings.

4.3 At all meetings, each member has one vote, with the proviso that not more than two
organizations may join from any one country.

4.4 At all meetings, Delegations should have full powers to make decisions on behalf of their
own organization.


5.1 The overall control of the Federation will be administered by the Council. One nominated
delegate from each member organization will serve on the Council. Council meetings will be
held once every year.

5.2 The Council will elect a minimum four officers: chairperson, vice-chairperson, treasurer
and secretary.


6.1 The general administration of the Federation will be undertaken by a team of a minimum
of four persons, consisting of a chairperson, a vice-chairperson, treasurer and secretary.
These persons will be elected by the Council to serve a period of 3 years and will be eligible
for re-election.

6.2 The chairperson shall:
– Be the custodian of the records of the Federation.
– Maintain record books in which official acts of the Federation are entered along with any
– Perform such other duties as may be determined from time to time by the Council.

6.3 The treasurer shall receive contributions and prepare annual reports on behalf of the

6.4 The secretary shall be responsible for the correspondence of the Federation.

6.5 The Council may by a two-third majority of the votes cast remove immediately any officer
at any time for any reason that may be considered contrary to the aims, or the operation of
the Federation provided that the individual concerned shall have the right to be heard before
a final decision is made.

6.6 Any officer may resign at any time by giving written notice to the Federation. Any such
resignation shall take effect upon the date of the receipt of such notice or at any later time
specified therein and unless specified therein the acceptance of such resignation shall not be
necessary to make it active.

6.7 Alteration to this Constitution shall receive the assent of two-thirds of the Members
present and voting at a General Meeting or an Extraordinary Meeting. A resolution of the
alteration of the constitution must be received by the Secretary of the Federation at least 30
days before the meeting at which the resolution is to be brought forward. At least 21 days
notice of such a meeting must be given by the Secretary to the membership, and should
include full information regarding the alterations.

6.8 Approval of the annual budget will also require a two-third majority vote. All other
decisions required by the Council or the administrative team will be accepted on a majority
vote of one.

6.9 The Council must authorize any expenditure that comes outside the budget approved by
the previous Council Meeting.

6.10 An Extraordinary Meeting can be called by one third of the members of the Council.

6.11 The Council may if necessary appoint an auditor to report to the Council.


The Federation may be dissolved by a Resolution passed by a two-thirds majority of those
present and voting at an Extraordinary General Meeting convened for the purpose of
which 21 days’ notice shall have been given (to the members). Such resolution may give
instructions for the disposal of any assets held by or in the name of the Federation, provided
that if any property remains after the satisfaction of all debts and liabilities such property
shall not be paid to or distributed among the members of the Federation but shall be given or
transferred to such other charitable institution or institutions having objects similar to some or
all of the objects of the Federation as the Federation may determine and if and in so far as
effect cannot be given to this provision then to some other charitable purpose.

This Constitution was approved at a meeting held in Amsterdam, The Netherlands on 23
June 2006 by delegates representing Scleroderma Patient Organizations from the following

Association des Patients Sclérodermiques de Belgique
Asociación Española de Esclerodermia
Cyprus League against Rheumatism
Hungarian Scleroderma Association
Irish Raynaud’s & Scleroderma Society
Raynaud’s & Scleroderma Association
Scleroderma Society
Sklerodermie Selbsthilfe e.V.

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