SWAN UK: Undiagnosed Children’s Day – Friday 26 April!

Undiagnosed Children’s Day – Friday 26 April!  A message from SWAN UK

We celebrate Undiagnosed Children’s Day every year on the last Friday of April.   It’s a chance to spread the word about what it means to be affected by a syndrome without a name, also known as an undiagnosed genetic condition, raise awareness of SWAN UK and reach out to more families who need support.   We know that without a diagnosis families can feel isolated and alone. This year our aim is to help more families find SWAN UK sooner.  Around 6,000 children in the UK are born with a genetic condition so rare it doesn’t have a name, yet there are only around 4,000 people in the SWAN UK community. We know there are lots more families out there who need support. 

Can you help us?   Create your own ‘I wish I’d heard about SWAN UK sooner’ story.   Why not use your phone to record yourself answering these questions and share and tag SWAN UK as well as your other contacts on social media? (Film landscape for Twitter and Facebook and portrait for Instagram or Facebook stories).  

  • How old was your child when you found SWAN UK and where were you in your diagnosis journey when you found us?
  • When did you realise that your child was undiagnosed?
  • What difference would it have made to you and your family if you’d found SWAN UK sooner?
  • How long was it until you got a diagnosis/ or how long have you been waiting and what impact has this had on your family?
  • What has SWAN UK meant to your family?

Other ways you can get involved include becoming a social media champion by sharing our posts, being a press volunteer or sharing your story to help people understand what it means to live with an undiagnosed genetic condition.   Visit SWAN UK’s Undiagnosed Children’s Day page for more ways to get involved and to download their resources such as social media images and fundraising activities.  SWAN UK can support you with all of the above so please get in touch to let them know how you’d like to get involved. Please email miriam.ingram@geneticalliance.org.uk or for fundraising: fundraising@geneticalliance.org.uk.

Fundraising and donating to SWAN UK

Help us raise vital funds by taking up one of our Undiagnosed Children’s Day fundraising ideas. Your donations help support the SWAN UK community, such as, by enabling us to hold virtual events like online discos, coffee meet ups, peer-to-peer support, training our wonderful Parent Reps and awareness raising initiatives for healthcare professionals, policy and decision makers and the wider public.

We’ve got lots of easy ways you can get involved:

  • Get sponsored to wear pink all week, host a pink tea party or set yourself a challenge such as a run or cycle (in pink). Take on a solo challenge, or ask colleagues or your child’s school to take part! Download our resources, including SWAN UK bunting and cupcake flags, swan craft activity pack and sponsorship forms on our website.
  • Share our Undiagnosed Children’s Day JustGiving Campaign with family, friends and colleagues.
  • Our Facebook fundraisers are back! Add a donate button to your Instagram and Facebook posts (choosing ‘Genetic Alliance UK’) or set up an online fundraiser on your account – this is one of the easiest ways to fundraise for Undiagnosed Children’s Day or as a birthday fundraiser throughout the year!
  • Renew your home or car insurance with EasyFundraising! Sign up to the programme, and you could raise up to £19 for SWAN UK
  • Set up a monthly donation to support SWAN UK throughout the year – from as little as £1, your donation can help us reach more people.

Fancy a face-face coffee?   Would you like the chance to meet other SWAN UK parents over a coffee? SWAN UK are looking to arrange some small meet ups but need a hand on the day to meet and greet and buy the drinks (card provided by SWAN UK). The first areas we’re looking at getting people together in are London and the West Midlands. Let us know if you can help and we’ll see if we can arrange one in an area that works for other parents too. Email: miriam.ingram@geneticalliance.org.uk.

Monthly virtual coffee meets   SWAN UK arrange monthly Virtual Coffee Meets, where we pair you up to meet online with another SWAN UK member for a chat. We’ve had some great feedback from these.   If you would like to take part or to find out more, please email: mary.instone@undiagnosed.org.uk.