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).
Our goals
- To spread awareness of Williams Syndrome at the European level, by amplifying the awareness-raising activities of individual national associations.
- To ensure effective coordination of, and collaboration between national and regional WS organizations in Europe, avoiding the unnecessary duplication of resources
- To help direct individuals with WS, as well as their families and carers, to their relevant national or regional associations and to appropriate potential providers of support
- To co-ordinate international research efforts by connecting relevant research institutions and professionals with WS organizations
- The sharing and translation of relevant publications and guidance materials into the languages of member associations
- To organize and participate in international congresses
- To promote and manage contact between WS organizations and research institutes outside of Europe
- To identify and secure funding to support the organization of leisure and educational camps for individuals with WS from member associations, hosted by volunteer member associations on rotation
Our ways of working
Each of our member associations supports FEWS by:
- Participating in FEWS meetings, including by bringing ideas, experiences and ensuring timely follow-up on actions
- Attending the yearly AGM meeting and participating in quarterly conference calls
- Arranging for timely decisions to be taken by individual member associations where these are required to ratify a decision or recommendation taken by the FEWS board
- Sharing resources across the network to avoid duplication of effort or cost, with a particular emphasis on making resources of the larger, more established associations available to the smaller associations
- Paying annual membership fees promptly which are tiered depending on the financial standing of each member organization
Our achievements in 2023 included:
- Continously FEWS has an ePAG (Europen Patient Advocacy Group) representative in ITHACA to ensure a democratic process of patient representation in processes around European Reference Networks (ERNs).
- Running our annual FEWS Photo Contest to coincide with the European wide WS Awareness Day, resulting in great engagement on social media. The theme was “My country, my culture”.
- Supporting the development of coordinated international guidelines for WS
- FEWS welcomed the Autour des Williams (France), Associazione Persone Williams Italia (Italy) and Stowarzyszenia Zespolu Williamsa (Poland) WS associations as new FEWS members
- We held our annual general meeting and networking dinner in Prague
- AISW initiated a naval cruise in Italy for people living with WS from Italy accompanied by their brother or sister. Two foreign pairs were invited. Two German brothers have participated.
- The date 7-11-23 was an additional awareness special day this year. We celebrated this special day with great international attention.
Our key objectives for 2024 are:
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- Support the Williams France federation organization of its international symposium on Williams syndrome in close collaboration with the CORAIL Center, the Rare Diseases Center of the Geneva University Hospital and the Swiss Williams Beuren association.
- Continuing to investigate possibilities for providing more camps for cultural exchange.
- Maintain and strengthen contacts to ITHACA, EURORDIS and with other international organisations.
- Organise a FEWS photo contest. The theme will be “Williams Syndrome and Sport”. Information on facebook group FEWS Photo Contest 2024.
- Implementing our brand logo identity in the FEWS website and other materials.
- Improve the sharing of research outcomes about WS, including by contributing to international guidelines
- Investigating the development of an online knowledge platform for FEWS associations and their members.
- Encourage and assist the international experts community to finalize the international guidelines on WS
- Welcoming additional member associations to the FEWS family
Our longer-term aspirations include:
- Spread knowledge and awareness of Williams syndrome.
- Continuing to develop active working relationships with other rare disease organisations
- Securing 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.
- Living with equality for all persons with WS, everywhere!
2023 Photo Contest Winners
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Members:
