SWAN UK (syndromes without a name) 2016
SWAN UK is the only dedicated support in the UK for families of children with undiagnosed genetic conditions.
The grant that currently supports SWAN UK ends in April 2016 and we vitally need to secure funds so that we can continue to support families and grow our services.
May 2016 - April 2017
In the UK each year, an estimated 6000 children are born with a condition that is likely to remain undiagnosed. Most have physical and/or learning disabilities and many have severe and complex medical needs. Without a diagnosis, their families have no idea what the future will hold for their child – whether they will walk, talk, or even how long they are likely to live. Families struggle to access the information and care that their children vitally need. Many feel deeply isolated and alone.
SWAN UK actively brings families together through our online community and through face-to-face meet-ups across the UK. We provide information and support, signposting families to relevant genetic research studies and other services. We work with health, social care and education professionals to increase understanding of undiagnosed genetic conditions and highlight the issues that families face.
To develop and support a community of families of children with undiagnosed genetic conditions.
Activities» Activities to reach more families of children with undiagnosed genetic conditions, including promotions and outreach work.
» Activities to improve support and advocacy for families, including developing local networks and online peer support systems.
The SWAN UK community will be stronger, with more families of children with undiagnosed genetic conditions accessing the support that it provides.
To support the development of high quality information and services.
Activities» Activities to improve information provision for families, including: providing regular newsletters and information events.
» Activities to engage SWAN UK families in research and healthcare policy including undertaking research studies.
Families of children with undiagnosed genetic conditions will be better informed about the services and support available to them.
To raise professional and public awareness of undiagnosed genetic conditions
Activities» Targeted awareness-raising campaigns for professionals and the public.
Professionals, service providers and the public will be more aware of undiagnosed genetic conditions and the support that SWAN UK provides.
Families of children with undiagnosed genetic conditions will have an ongoing source of support and information. They will be more able to access services and support and will feel less isolated and alone.
Professionals and the public will have more understanding of undiagnosed genetic conditions and the issues that families face.
Our main risk is around securing funding to continue the project in the long term. We have addressed this risk through a clear, written fundraising strategy, which includes income from a range of sources. We have a strong fundraising team to deliver the strategy.
Through regular reports on social media, through our website, newsletter and by written reports, if requested.
Budget - Project Cost: £75,800Loading graph....
Amount Heading Description £75,800 Family services Providing support, information and events for families across the UK
Current Funding / Pledges
Source Amount Corporate sponsors £10,000 Conditional Community and events fundraising £27,000 Conditional
Our project will support families of children with undiagnosed genetic conditions across the UK. It will operate from our Head Office in London, with activities for families and professionals taking place across the UK.
The people who will benefit from our project are children with undiagnosed genetic conditions, their parents, siblings and wider families members. In the UK around 6000 children a year are born with a genetic condition, for which they may never get an accurate diagnosis. SWAN UK (syndromes without a name) is the only dedicated support in England for their families.
Genetic Alliance UK has extensive experience of running large, multi-year projects with budgets up to £500,000. . Two of these projects have involved working with families of children with undiagnosed genetic conditions and these projects have exceeded all our expectations, and have had a huge impact on the lives of families across the UK.
Read more about the Charity running this project.
SWAN UK Project Coordinator
SWAN UK Digital Communications and Support Officer
Nottinghamshire Parent Representative (volunteer)
West Midland Parent Representative (volunteer)
“When we were told that our son may never get a diagnosis, there was nowhere to turn. Until we found SWAN UK.”