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Star in the UK's Rare Disease Day video!

...and help us raise awareness and improve understanding of Polycystic Kidney Disease.

Genetic Alliance UK
Gare Disease UK

Rare is strong. Rare is many. Rare is Proud.

As part of the upcoming Rare Disease Day on 28 February 2021, the Genetic Alliance is making a video to capture the experiences of those living with a rare condition. This year they want to feature as much of the UK’s rare community as possible in their video and are inviting you to send your footage of living with Polycystic Kidney Disease – moments of joy, tears, frustration and everything in between. 

This is a great opportunity for you to play a part in helping raise awareness of the impact PKD has on so many lives.

Who can submit

Anyone in the UK living with Polycystic Kidney Disease (ADPKD or ARPKD), as well as their families, friends, carers. All ages, ethnicities, cultures and conditions welcome. 

How to get involved

Read the video instructions below. Check out the wishlist of ‘moments’ and see whether you already have videos that might work. If not, get filming! Share as little or as much as you’d like. The finalised video will only be three minutes long so it’s possible that not all videos received will be used. We’ll be in contact in January to let you know if your footage will be used for the video and/or social media to check you are still happy with this.

Where to send your footage

Send your video clips to This email address is being protected from spambots. You need JavaScript enabled to view it. via email, WeTransfer, Dropbox or Googledrive.


Please share your clips with us by Wednesday 13 January 2021.

Footage wishlist

The Highs

  • Silly videos – with families, friends, pets, playing, Snapchat filters, Tiktok dances – the everyday things we all film
  • Hobbies – dancing, sports, art, craft, playing instruments, sensory time, reading. Whatever you do to relax 
  • Happy interactions – hugs, kisses, family time, holding hands, eating together, laughing
  • Everyday responsibilities – Looking after children, parents, cooking, working 
  • The quieter moments – relaxing on a sofa, brushing teeth, walking in a park, sitting quietly
  • Receiving 'The Call'/awaiting transplant surgery, recovering from transplant

The Lows

  • Experiencing pain, struggling to do things like walk or eat, feeling isolated
  • Medical visits – check-ups, having bloods taken, undergoing dialysis, post transplant difficulties
  • All the medication you have to take. Footage of all of it piled together. Footage of you/your loved one taking medicine
  • Medical procedures/therapies at home – dialysis, diet restrictions, excess water intake (perhaps you take tolvaptan?)
  • Struggling to find things to wear due to your enlarged PKD kidneys/Liver

Video instructions

Check out this video by Uber for the sort of footage we are looking for.

  • Film in landscape, not portrait
  • Use a phone or video camera but please only email digital files
  • No Instagram colour filters
  • Have the lights on – we won’t be able to use footage if it’s too dark
  • No narration or videos that are just conversations. Laughter is encouraged! 
  • No brand logos/personal details e.g. on medicine bottles
  • Footage only needs to be around 5-15 minutes long – remember this will be edited to fit into a compilation video

If you have any questions please email: This email address is being protected from spambots. You need JavaScript enabled to view it. or This email address is being protected from spambots. You need JavaScript enabled to view it.

Rare Disease UK is a campaign run by the charity Genetic Alliance UK. Registered charity numbers 1114195 & SC039299.

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PKD Charity is a Member of

  • Fundraising Regulator Website
  • Visit PKD International website
  • Visit Ciliopathy Alliance website
  • Visit the Genetic Alliance UK website
  • Rare Disease UK Website
  • Specialised Healthcare Alliance Website
  • FEDERG Website
  • Visit EURORDIS website
  • KPIN