FraXI Full Membership is open constituted country Fragile X family associations. The existing family organisations in the European Fragile X Network are Initial Members of FraXI. Once registration of FraXI as an international charity is complete, we can accept applications for Full Membership. Please drop us a message via Contact if you are interested in Full Membership.
The Founding Members of Fragile X International are:
· Belgium : Association X fragile Belgique (x-fragile.be)
· Denmark: Landsforeningen for Fragilt X Syndrom i Danmark (fragiltx.dk )
· Finland: Frax Ry (facebook: frax.ry)
· France: Mosaïques (xfragile.org)
· France: Fragile X France – Le Goëland (xfra.org)
· Germany: Interessengemeinschaft Fragiles-X e.V. (frax.de)
· Ireland: ifxs – Irish Fragile X Society (fragilexireland.org)
· Israel: The National Fragile X Association of Israel (xshavir.org.il)
· Italy: Associazione Italiana Sindrome X-Fragile Onlus (xfragile.net)
· The Netherlands: Fragiele X Vereniging Nederland (fragielex.nl)
· Norway: Foreningen for Fragilt X-syndrom (frax.no)
· Poland: Fundacja “Rodzina Fra X” (www.rodzinafrax.pl)
· Portugal: Associação Portuguesa da Síndrome do X-Frágil (apsxf.org)
· Spain: Federacion Espanola de Asociaciones del sindrome X-Fragil (xfragil.org)
· Sweden: Föreningen Fragile-X (fragilex.se)
· Switzerland: Fraxas (fraxas.ch)
· UK: The Fragile X Society (fragilex.org.uk)
Full Membership is open to constituted country FX family associations which meet the following criteria:
- They must be charity associations, that is, a registered charity in the sense that the association is registered in its home country, and, following the home country’s laws, is treated as a non-profit, non-commercial, non-governmental association.
- They must be “run by families” meaning that at least 75% of the Board of Directors being family members of a person with FXS or having FXS themselves; that the Chair must be among those 75%.
- No more than twenty percent (20%) of their budget should come from any combination of monies from companies with a possible conflict of interest (including companies in the health care sector; pharmaceutical companies; insurance companies).
- An association must have existed as a registered charity for at least 3 years before it can become a full member [though they could be included as a provisional, non-voting full member, until they have reached 3 years].
Procedures for becoming a Full Member
To apply to become a Full Member of FraXI, an association must make a written application (in English, FraXI’s official language) to the FraXI Board, stating the number of members, associational structure and staffing, also including a copy of their constitution and three years of annual reports, to include the financial reports.
If the application is approved, the FraXI Board will inform the applicant that it has positively reviewed the application and that their admission will be proposed to the next General Meeting.
If the application is not approved by the Board, the applicant will be contacted to explain the decision; and, if appropriate, asked for submission of missing documents or further information.
Full Membership will be granted once annual full membership fee is paid.
What are the rights and responsibilities of Full Members?
- Full Members have the right to take part in General Meetings by sending up to three official delegates;
- Full members have the right of one vote at a General Meeting;
- Full members may propose projects and public statements to be made by FraXI; suggest changes to the by-laws/statutes; nominate people to become members of FraXI’s Board; nominate people to serve on committees.
- Full Members must ensure they do not violate their national charity association laws or become involved in any unlawful activities.
- Full Member's must ensure that no more than 20% of their budget comes from any combination of monies from companies with a possible conflict of interest (including companies in the health care sector; pharmaceutical companies; insurance companies). Any deviation from this rule must be reported to the Board and can be accepted for at most one year in a row, with their membership being reviewed.
- Full Members must ensure that FraXI can contact their Boards, particularly, that their contact details are up to date.
- Full Members must assign a Board-appointed family member to be responsible for communication with FraXI.
- Full Members should reply to communications by FraXI within a reasonable time frame.
- Full Members should send in an annual country report including financial report and share best practices so that all can learn from each other.
- Full Members will adhere to the Vision, Mission and Statutes, upholding the values of FraXI.
- Full Members have limited liability and do not link their own assets to the fate of the association.
Full Membership Fees range from €25 to a maximum fee of €500. Please see more information on fee costs below
- A reduced fee of €25 for any organisation whose gross income is below €2000. In cases of need, the Board may waive the membership fee for a country organisation.
- A basic fee of €100 for organisations with a gross income between €2000 and €9999.
- A fee calculated by 1% of an organisation’s gross income if their income is over €10000, with a maximum membership fee of €500.