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
- Promptly paying annual membership fees which are tiered depending on the financial standing of each member organization
- 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).
Our achievements in 2024 included:
- 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 “Sports and Games”.
- Supporting the development of coordinated international guidelines for WS
- FEWS welcomed Somos Williams, Associaçao Portuguesa de sindrome de Williams as new FEWS member
- Participation in the International Symposium on Williams Syndrome, organized by the Williams France federation organization in close collaboration with the CORAIL Center, the Rare Diseases Center of the Geneva University Hospital and the Swiss Williams Beuren association.
- We held our annual general meeting in Stockholm with help and thanks to the Williams Syndromföreningen Sweden association. Also Eurordis provided great help with a grant to travel for our members from the eastern European countries.
Our key objectives for 2025 are:
- Continue 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 “Happy Smiles”. Information on facebook group FEWS Photo Contest 2025.
- 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 make progress on the international guidelines on WS
- Welcoming additional member associations to the FEWS family
- The Dutch association has an approved funding to develop the knowledge platform Waihonapedia for WS. FEWS will encourage members to participate, being a part of the development and to share knowledge.
Our longer-term aspirations include:
- Spread knowledge and awareness of Williams syndrome.
- Continuing to develop active working relationships with other rare disease organisations in order to share experiences, good practices and resources.
- 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!
2024 Photo Contest Winners
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Members:
