The European Federation of Williams Syndrome (FEWS) is the official association of national organisations across Europe which are actively involved in supporting people with the rare genetic condition, Williams Syndrome (WS).
The constitution was officially published on September 15th 2004 in the ‘Moniteur Belge’ resulting that FEWS has become an official International Organisation.
FEWS exists to pursue the following objectives:
- To spread awareness of Williams Syndrome at the European level, by amplifying the awareness-raising activities of individual national associations
- To ensure effective co-ordination of and collaboration between national and regional WS organisations in Europe, avoiding the unnecessary duplication of resources
- To help direct individuals with WS, as well as their families and carers, to appropriate providers of support
- To co-ordinate international research efforts by connecting relevant research institutes and professionals with WS organisations
- The sharing and translation of relevant publications and guidance materials into the languages of member associations
- To organise and participate in international congresses
- To promote and manage contact between WS organisations and research institutes outside of Europe
Our key objectives for 2018 are:
- to support the development and growth of newly-established WS associations, such as those in Serbia and Bulgaria, by sharing best practice and resources across the FEWS network;
- to inform the development of a European Rare Diseases registry by engaging with the European Reference Network on Rare Congenital Malformations and Rare Intellectual Disability network (ITHACA) and its appointed solution provider, OpenApp;
- to bring together WS individuals and families from across Europe by organising a joint FEWS Camp and WS Convention in the UK.
Our longer-term aspirations
In order that we can increase the value and impact of FEWS to our member associations, and ultimately to their respective WS members and supporters, we aim to work over the coming three years towards the following:
- develop active working relationships with other rare disease organisations in order to share experiences, operating lessons and resources;
- secure reliable core funding to support the employment of a staff member that can be a permanent point of liaison for the FEWS member associations and with external bodies such as Eurordis;
- establish a permanent European holiday destination for WS adults;
- refresh the FEWS brand to make it connect more strongly on an emotional level.
Our ways of working
FEWS does not have any employed staff; we are all volunteers who are also heavily involved in running our respective national WS associations, also as volunteers. Our only core funding comes from the modest fees that our member associations pay to FEWS annually. These fees cover the basic costs of administering FEWS. The majority of the initiatives that we organise or participate in require additional funding, which we secure from a number of sources, including the European Commission. All of this means that the resources available to us are very limited. With this in mind, each of our member associations have agreed to support FEWS in the following ways:
- prompt payment of annual membership fees, which are tiered depending on the maturity and financial standing of each member organisation;
- taking all reasonable steps to ensure the continuity and maximum attendance of their delegate(s) at FEWS meetings;
- ensure timely follow-up on actions agreed at our quarterly meetings and our Annual General Meeting;
- arranging for timely decisions to be taken by individual member associations where these are required to ratify a decision or recommendation taken by the Board of FEWS; and
- proactive sharing of resources amongst our member associations to avoid duplication of effort or cost, with a particular emphasis on making resources of the larger, more established associations available to those that are less established.
Our achievements so far
Since several years we have established a hugely successful and popular program of annual summer camps where Williams people are given unique opportunities for discovery and social interaction. We are also member of the international charity working on behalf of rare disorders – EURORDIS, and we try to participate fully in their international network.
Our priorities for 2020