Undiagnosed Children’s Day 2019 – get involved

We’re looking forward to celebrating our awareness day, Undiagnosed Children’s Day, with you, on Friday 26 April and would love for you to get involved.

There are lots of ways you can get involved whether you want to help share our messages on social media, share your lion images with us, share your story, take part in media work, hold an information stand, fundraise or donate. Find out more below.

Social media
Share your quotes with us for us to use on social media. Let us know:

  • What makes your undiagnosed child and their sibling/s fierce like a lion?
  • How does your child show courage on a daily basis? What daily things does your child go through or what challenges do they try to overcome?
  • How have you had to show resilience as a family as a result of having a child with an undiagnosed condition?
  • What impact has having an undiagnosed child had on your family and how have you come together as a family?
  • Why does your undiagnosed child and sibling/s give you a sense of pride?
  • How has SWAN UK given you courage in your everyday life e.g. has being a member given you more confidence to push for your child’s needs to be met and for the support you need/ talk to professionals or your friends and family about what it means to have a child with an undiagnosed genetic condition, enabled you to step out of your comfort zone e.g. by doing something you haven’t done before such as going on one of our family events, making new friends, helping to hold an information stand or sharing your story.
  • When you tweet about Undiagnosed Children’s Day on 26 April, use the hashtag #roarsome and tell us why your child and/or their sibling(s) is #roarsome
  • Dress as lions and share a video of your best roar
  • Retweet and share our social media posts
  • Download our Undiagnosed Children’s Day Twibbon for your profile pictures.

You can start emailing your quotes and photos now to [email protected].

Volunteer for a Twitter Takeover
On Undiagnosed Children’s Day we will have hour long Twitter Takeovers led by SWAN UK members from 8am to 11pm. You don’t need to be a Twitter expert to get involved – we will support you. If you’re interested email: [email protected].

We’ll also be looking to spread the word during our weekly Twitter Takeovers in April so if you’d like to help let us know.

We’ll have an overlay image of a lion so you can change your profile picture and a thunderclap so that you can easily share our message across social media.

Share an image of your children dressed as a lion and tell us why they are: #Roarsome

We’ll also be providing lion masks for you to download so you can share your photos.

If you are happy for us to make your photos and quotes into infographics please email them to [email protected] or post them on the Facebook post that we put up.

Instagram challenge
We will be posting SWAN UK children’s lion images with quotes from children, young adults, siblings and wider/family members about what they have achieved that makes them brave. Please share yours with us: swanchildrenuk.

Share your story
We want to hear from as many people as possible so that we can share your stories on our website and social media and, if you are happy, with the media too. We’d love to hear about your journey and what makes your child brave like a lion, as well as how having an undiagnosed genetic condition impacts on the whole family. We can support you with this and send you a Q&A if you would like.

Sign up to be a press volunteer and approach your local press
Let us know your name, where you’re from and what media you’d be happy to do e.g. local or national press and print, radio or TV. We can then get in touch with you if we have any opportunities. We’d also encourage you to approach your local press with your story and information about Undiagnosed Children’s Day. Contact us and we can support you to get in touch.

Hold an information stand
Help us spread the word about SWAN UK by holding a stand in your area such as at your local hospital this Undiagnosed Children’s Day. We can give you all the resources you need.

We have some brilliant fundraising activities and ideas for how you can get involved in this year’s Undiagnosed Children’s Day:

  • Download and share our Undiagnosed Children’s Day fundraising pack
  •  Visit our online shop to order your free collection tin for your fundraiser, or buy a t-shirt or hoodie for Undiagnosed Children’s Day: undiagnosed.org.uk/shop
  • We can kit you out if you’re hosting a fundraiser for SWAN UK – claim your free t-shirt today.
  • Do something brave – whether it’s skydiving, holding a tarantula, climbing a mountain or learning a new skill, get sponsored to put yourself out of your comfort zone and raise money for SWAN UK. #roarsome
  • Join our Virtual Marathon – run, walk, skip or jump 26 miles over the whole of April
  • Readathon – read as many lion themed books during April as you can and get people to sponsor you £1 or £2 per book. We have a great suggested reading list for all reading abilities/ages
  • Calling all schools – We are looking for primary schools that would like to get involved. We can provide information to raise awareness of undiagnosed genetic conditions, support parents or siblings to hold a school assembly and have a fundraising pack to send out that is full of activities for children and ideas of how to raise money for SWAN UK. We’d love to see all the children dressed up as lions for the day and bring in a £1 suggested donation. Download a schools activity pack here
  • Get your company involved – ask your workplace if they’ll host a bake sale or coffee morning to raise funds for SWAN UK. You can also ask about nominating SWAN UK for their Charity of the Year. We are happy to help with any application process


  • Donate directly through the SWAN UK website. You can make a one off donation or set up a regular direct debit
  • Donate through Facebook. You can click the donate button on our Facebook page and donate by card or PayPal. You can also add a donate button to any posts you share on Facebook
  • Celebrate your birthday or a special occasion by setting up a Facebook fundraiser. Click ‘fundraisers’ and the ‘raise money’ button
  • Purchase a hoodie, t-shirt, tote bag or running vest to show your support for SWAN UK
  • Set up a JustGiving page for your fundraiser. This is an easy way to share your challenge with your family, friends and colleagues and collect donations all in one place.
  • Help us make the loudest roar to raise awareness of undiagnosed genetic conditions and enable SWAN UK to continue supporting these courageous families.

If you have any questions about fundraising for SWAN UK this Undiagnosed Children’s Day email: [email protected].

Email us to share your lion photos and quotes and find out more about getting involved: [email protected].

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