SWAN UK (syndromes without a name) is the only specialist support network available in the UK for families of children and young adults affected by a syndrome without a name. We work with families of affected children and young adults aged 0–25, providing support and information in hospital, at home and in their local communities. 

What support does SWAN UK offer?

We offer 24/7 access to support and information via our members –only online communities, regular opportunities for parents to access face-to-face support as well as running regular whole family events.

Our team of volunteer Parent Reps work locally to help facilitate our SWAN UK Local Networks, providing on-the-ground support and educating local services and professionals about the issues faced by families affected by undiagnosed genetic conditions.

Membership is free, families just need to complete our registration form which you can download here:
undiagnosed.org.uk/registration-form.

You can return it by email to: joinus@undiagnosed.org.uk

You can post it to: Genetic Alliance UK, Level 3, Barclay House, 37 Queen Square, London, WC1N 3BH

How can I make contact with other families affected by a syndrome without a name?

As a member of SWAN UK you will have access to our members-only forums where you will be able to chat to other families affected by a syndrome without a name in your local area and across the UK. You will also be able to attend our numerous events and meet-ups. If you have specific challenges you are facing we can also support you by putting you in contact with other members who may have been in similar situations.

SWAN UK Local Networks

One of the most frequent requests from SWAN UK members is local support, so in May 2014 we started a pilot project called ‘SWAN UK Local Networks’.

At its core a SWAN UK Local Network is a community of SWAN UK members who live near each other coming together to share the highs and lows of raising a child with an undiagnosed genetic condition. It is also a way for SWAN UK members to meet in person, make friends locally and share experiences and information.

The SWAN UK Local Networks are also about raising awareness locally by making links with local professionals, services and within the wider community. It’s likely that each one will be slightly different depending on what’s most important to members in that area.

Most Local Networks have a SWAN UK Parent Rep who volunteers a few hours a week to act as a local point of contact and to help raise the profile of SWAN UK locally.

There are lots of ways you can get involved in helping to build your local SWAN UK community and reach out to other families. You could help arrange or attend a regular coffee morning, share posters and leaflets locally or perhaps help arrange a family event. Maybe fundraising is more your thing or you’d be happy to share your experience with the local press?

To find out more please contact: info@undiagnosed.org.uk

 

What support can a SWAN UK Parent Rep Offer?

SWAN UK Parent Reps are members of SWAN UK who volunteer a few hours each week to act as a local point of contact. They help raise awareness of the support SWAN UK can offer by making links with local services and professionals and help bring local parents together. They also act as an important link between the local community and the national SWAN UK community and can help to signpost families to what is available locally.

All SWAN UK Parent Reps are also parents of children with undiagnosed, or newly diagnosed, genetic conditions. Like all parent carers, they have huge demands on their time and so cannot offer individual advocacy or support to other members. SWAN UK Parent Reps cannot offer medical advice, counselling, babysitting services or legal advice. SWAN UK Parent Reps are all volunteers so please be aware there may be a delay in their replies to your enquiries. For all urgent issues please contact info@undiagnosed.org.uk.

How can I find out about SWAN UK events in my area?

We run regular events throughout the year – everything from hiring out a sensory room for a few families through to large day trips to theme parks for big groups of members! All of our events are free for our members to attend but you will usually need to pay for your own travel and food.

We advertise our events in various ways:

  • Via the news and events page on our website
  • In our quarterly newsletter
  • In our monthly E-news
  • In our regional member forums
  • If you live in a SWAN UK Local Network area you can also make contact with your SWAN UK Parent Rep who will be able to tell you what is happening locally.

All of the ideas for our events come from our members so if you have an idea about an event you’d like to see in your area please get in touch by emailing info@undiagnosed.org.uk

Useful links
undiagnosed.org.uk/join/#whyJoinUs
undiagnosed.org.uk/our-team
undiagnosed.org.uk/contact-us
undiagnosed.org.uk/news-events
undiagnosed.org.uk/support-information
yourgenome.org
undiagnosed.org.uk/join

Scroll down the page to see more useful links.

To be reviewed January 2020

 

 

 

 

 

 

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