SWAN UK is the only dedicated support network in the UK for families affected by a syndrome without a name - a genetic condition so rare it is often impossible to diagnose. We are run by the national charity Genetic Alliance UK who work to improve the lives of people and families affected by genetic, rare and undiagnosed conditions.
1 in 25 children in the UK are born with a genetic condition and it is estimated that approximately 6,000 are born in the UK each year with a genetic condition so rare it is unlikely to get a confirmed diagnosis. Many of these children will never receive a diagnosis at all, leaving their family in a state of limbo with no answers. These children often have severe and complex medical and learning disabilities.
We work directly with over 3,000 parents across the UK to provide parental support sessions, a peer support network, family events, information about genetics and access to diagnosis and information events.
We’re looking for a student to help us reach out to and expand our network of healthcare professionals so we can raise awareness of SWAN UK and encourage referrals to our support network.
The Covid-19 pandemic has restricted families’ access to appointments with medical professionals including routine check-ups with health visitors, genetics appointments and more. Appointments such as these are often the gateway for families affected by undiagnosed genetic conditions to be referred to SWAN UK and start accessing the vital support that we provide. This means that there are currently lots of families who would benefit from our support but aren’t aware that that support is available to them.
We’re planning on re-starting our outreach programme by reaching out and re-connecting with front-line professionals. By educating them about undiagnosed genetic conditions and how to identify families who may be affected by them, and letting them know about the support we can provide at SWAN UK we’re hoping to kick-start referrals to our support network.
Competencies you can develop on this placement:
- Communicating public health information
- Relationship-building and collaborative working
Genetic Alliance UK
7 Blackhorse Lane