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
- 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 2022 have included:
- The camp at “Frambu” in Norway, for a FEWS Youth and Cultural Exchange has taken place with 12 participating countries.
- Participation in the International Conference Williams Syndrome 2022, hosted by the Associazione Italiana Sindrome di Williams. FEWS contributed with presentations on the “Labor situation in your country”.
- Conitinously FEWS has an ePAG (Europen Patient Advocacy Group) representative in ITHACA to ensure a democratic process of patient representation in processes around European Reference Neteworks (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 “Williams Syndrome and the joy of nature”.
- Supporting the development of coordinated international guidelines for WS
- The FEWS sponsored global study about Anxiety and Emotion Regulation in Young People with Williams Syndrome and Down Syndrome during the COVID-19 Outbreak resulted in a published paper.
- A new logo was introduced
- FEWS welcomed the Swiss WS association as a new member
Our key objectives for 2023 are:
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- Continuing to investigate possibilities for providing and having 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 “My country, my culture”.
- 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.
Our longer-term aspirations include:
- Spread knowledge and awareness of Williams syndrome.
- Continuing to develop active working relationships with other rare disease organisations
2023 Photo Contest Winners
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Members:
