The EACD Families & Users’ Forum (FUF) will be the body through which persons with lived experience, their family members, and close others  participate in the organized plans and actions of EACD.

Contact:

Aim of the Families & Users’ Forum:

To foster cooperation between people with lived experience, their family members, and close others with professionals and researchers in the field of childhood-onset disabilities in matters related to science, education and the development of better responses to the needs of people with lived experience, their family members, and close others.

This can relate to among other:

1. Identification of the needs of individuals with a childhood-onset disability, their families and close others,    
2. Organization of, or contribution to, training sessions, scientific sessions, debates, work groups, publications, ethical  advice, selection processes, ...   
3. Expertise from life experience on questions raised by EACD or groups connected to EACD,   
4. Contribution to the network of national societies or international societies connected with EACD,   
5. Any matter in relation to the aims of EACD for which the Families & Users' Forum has an interest

The Families and Users’ Forum shall be consulted by the GMC and/or Local Organizers regarding the EACD Annual Meeting and other EACD Events. Any change in the aims, values, and ethos at EACD should ask for advice from the Families and Users’ Forum.

Families & Users' Forum Members:

Identified Priorities:

The EACD Families and Users’ Forum Coordinators identified three priorities important to users and families where it will focus its initial work upon:

Priority 1: Establish the EACD Families & Users' Forum (FUF), initiate regular meetings of the FUF, and extend the current FUF membership to ensure appropriate representation with diverse backgrounds

The FUF is the body through which individuals with a childhood-onset disability, their families and close others concerned across Europe participate in the organized plans and actions of EACD. Among the FUF members, a maximum of three FUF Coordinators are appointed for a period of 2 years. The FUF Coordinators organize the work of the FUF and ensure appropriate connection and participation in the work of the EACD General Management Committee and other committees/groups at EACD. The FUF Coordinators are responsible for having a work agenda produced for FUF meetings. The FUF can undertake any activity that directly or indirectly contributes to the achievement of its objectives. To ensure appropriate connections and provide support three professional delegates will be appointed by the EACD General Management Committee for a renewable one-year term. The assigned professional delegates are expected to join FUF meetings upon request, and to present an update of EACD’s plans, actions, and activities during such meetings.

Priority 2: Ensure participation of persons with lived experience, family members and/or close others in the ongoing activities by the EACD.

The involvement roles for an individual FUF member may vary between the different activities and/or meetings of the EACD. FUF members will be asked at regular intervals to indicate their preferred involvement role into the various activities of the EACD. The final decision on the integration, implementation, and execution of the preferred involvement role of a FUF member into EACD activities and/or meetings is up to the General Management Committee after joint consultation with the FUF and the FUF Member in question. The preferred involvement role into a specific activity of the EACD can be adjusted at any time upon request by the FUF member itself, or by a majority of the vote during a meeting of the Families and Users’ Forum, or by a majority of the vote during a meeting of the General Management Committee.

Priority 3: Improve the accessibility and translation of research findings to persons with lived experience, their families and close others concerned

There is a gap between the volume of knowledge generated through research on childhood-onset disabilities and the application of that research into practice and policy where it is likely to have positive impacts. This failure to translate research into practice and policy is due to a complex variety of reasons including among other lack of time, lack of resources, and lack of expertise on the topic of knowledge translation. As a result of this gap, users and families may not benefit optimally from advances in healthcare, while healthcare systems may be exposed to unnecessary expenditure. In order to improve this process of knowledge translation, it will be aimed to create a practical framework for the translation of research findings into practice and policy, and to develop tools that facilitate this process.

Any individual can apply as a Families and Users’ Forum (FUF) member. The terms and conditions for joining the Families and Users’ Forum as a FUF member are the following:

• The candidate FUF member has an interest in the problems, support, care, or treatment of childhood-onset disabilities and is either an individual with a childhood-onset disability or is a family caregiver/ close other concerned for such an individual.
• The candidate FUF member is expected to act as an individual working for the common goals, not as delegate of another organization he/she may be a member of.

A candidate FUF member must submit a written application request to the EACD and be endorsed by at least one member of the Families and Users’ Forum, EACD General Management Committee member and/or National Coordinator. To facilitate representation of children, adults, family caregivers and others close concerned from all over Europe, best efforts will be undertaken by those proposing new candidates to achieve FUF member representation reflecting among other the different types of childhood-onset disabilities, the different partners (children, adults, family caregivers and others close concerned), and the different geographical regions and countries across Europe.

EACD membership, and the accompanying annual membership fee, is not a requirement for becoming a Families & Users' Forum (FUF) member, although FUF members may decide at a personal level to apply for "regular" EACD membership if they wish. In any case, a FUF member will be offered an associate membership to EACD (member without voting right at the AGM).

Contact: