FESCA, Federation of European Scleroderma Associations aisbl, acts at a pan-European level and works in conjunction with its member associations to enhance awareness of this highly debilitating, progressive disease, and to promote optimal standards of care for every person living with the scleroderma disease in Europe.
1.1. The name of the Federation will be :
FESCA ivzw (FEDERATION of EUROPEAN SCLERODERMA ASSOCIATIONS)
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 Europe.
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 objectives.
4.1. Membership of FESCA is open to all the National Patient Organisations in Europe providing support for people with scleroderma.
The Federation may also consider admission to countries near Europe.
4.2. Each member organisation 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 organisations may join from any one country.
4.4. At all meetings, Delegations should have full powers to make decisions on behalf of their own organisation.
5.1. The overall control of the Federation will be administered by the Council. One nominated delegate from each member organisation 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 amendments
- 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 Federation.
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 authorise 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 organisations:
A.I.L.S.- APMAR – ASSMaF
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
Sklerodermie Selbsthilfe e.V.
FESCA, Federation of European Scleroderma Associations aisbl, acts at a pan-European level to promote and achieve its objectives in alignment with the aims of the national groups it represents. As an umbrella group, FESCA supports its member organisations, while the support of individual sufferers of scleroderma remains the sole remit of national organisations.
FESCA’s objectives include encouraging the active involvement of politicians and pharmaceutical companies, working with doctors to secure earlier diagnosis and better treatments, and creating greater awareness of scleroderma so that those who suffer from it can access proper, equitable care.