Who are we?


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 Delegates at Annual Meeting in Paris 2016

Our goals

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 priorities for 2017

  • Ensure an efficient and productive transition of Board responsibilities, following the election at our AGM in 2016 of a new Treasurer and a new Chair;
  • consider the feasibility, efficacy and potential parameters of establishing a European WS registry, with the objective of supporting more effective research and collaboration internationally;
  • update and share clinical guidelines on WS, led by the Williams Syndrome Foundation in the UK
  • building on the success of previous camps, including most recently that held in Ireland in 2016, hold the biggest and best FEWS camp to date, hosted by the Italian Association for Williams Syndrome;
  • improve the usefulness of the FEWS website to WS people, their families and carers;
  • engage more effectively, and draw more benefit from, key European organisations including Eurordis, the voice of Rare Diseases patients in Europe, and its online platform centred on patients and their carers, RareConnect;
  • support the Asociación Síndrome Williams España (WS Association of Spain) to organise an International WS Conference; and
  • recruit new members to FEWS from those countries that are not yet represented.

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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.


Members:

Country Member
Belgium Williams-Beuren Syndroom vzw
Bulgaria Williams SYndrome Association Bulgaria
Czech Republic Willík – obcanské sdruzení rodicu a prátel detí s Williamsovým syndromem
Denmark Dansk Forening for Williams Syndrom
France Williams France
France Autour des Williams
Germany Williams-Beuren-Syndrom Bundesverband e.V.
Hungary Magyar Williams Szindróma Társaság
Ireland Williams Syndrome Association of Ireland
Italy Associazione Italiana Sindrome diWilliams
The Netherlands Vereniging VG – netwerken – Williams
Norway Norsk Forening for Williams Syndrom
Romania Asociatia Williams Syndrome
Slovakia Spoločnosť Williamsovho syndrómu
Spain Associacion Sindrome Williams deEspaña (ASWE)
Sweden Williams Syndromforeningen I Sverige
United Kingdom The Williams Syndrome Foundation

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