Please drop us a message via Contact if you are interested in Full Membership, Associate Membership, or becoming an Affiliate Group.
Full Membership
Full Membership is open to constituted country Fragile X 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 may be elected a provisional, non-voting full member until they have existed as a registered charity for at least 3 years.
- Ideally, the country family association would have a person with FXS on their Board or involved in their governance.
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. Full Membership will be granted once the 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.
What are the fees for Full Membership?
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.
Associate Membership
Associate Membership is available to corporations, non-family associations, and family organisations which are not yet registered charities.
Corporations or non-family associations may submit a written application, in English, to the Board, including information on the association and why they would like to be an Associate Member of FraXI. The Board will consider all Associate Membership applications.
What are the Rights and Responsibilities of Associate Members?
- Associate Members have the right to attend any open forums of a General Meeting (Associate Members may not attend closed sessions of a General Meeting; they do not have voting rights.)
- Associate Members may suggest projects and other ideas to their country representatives; if there is not a Full Member from their country, they may present ideas directly to the Board;
- Associate Members will support the Vision and Mission of FraXI, and will be bound by the Statutes of FraXI;
- Associate Members should reply to queries from FraXI within a reasonable time frame.
- Associate Members have limited liability and do not link their own assets to the fate of the association.
What are the fees for Associate Membership?
Other charitable organisations: €100
Corporations: €1000
Affiliate Group
An Affiliate Group is a group of families who have not yet formed a registered non-profit association in their own country but are in the process of doing so. Only one Affiliate Group is allowed per country, and the aim is that FraXI helps these families form their own country Fragile X family association charity.
Affiliate Groups must be non-profit and non-governmental; and led by families who have members with FXS or FXPAC. Affiliate Groups must demonstrate commitment to improving the lives of those with FXS and FXPAC, adhering to the Mission and Values of FraXI.
What are the fees for Affiliate Groups?
The yearly fee for an Affiliated Group is €100, with a reduced fee of €25 for any organisation whose gross income is below €2000.
