Rare is strong. Rare is many. Rare is proud.
As part of the upcoming Rare Disease Day 2021 we are making a video to capture the experiences of the rare community. This year we want to feature as much of the UK’s rare community as possible in our video so we need you to send us your footage – moments of joy, tears, frustration and everything in between.
WHO CAN SUBMIT
Anyone in the UK living with a rare condition, as well as their families, friends, carers. All ages, ethnicities, cultures and conditions welcome.
HOW TO GET INVOLVED
Read the video instructions below or download this guide. Check out the wishlist of moments we want to capture 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 video will only be three minutes long so we might not be able to use everything we are sent for the video, but anything we don’t use for the video we will use on our social media. We will be in contact in January to let you know if we will be using your footage 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 [email protected] via email, WeTransfer, Dropbox or Googledrive.
Please share your clips with us by Wednesday 13 January 2021.
- 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
- The tough times – experiencing pain, struggling to do things like walk or eat, crying, being alone.
- Medical visits – check-ups, in a hospital bed, getting an injection, sitting in the waiting room, using a ventilator, receiving treatment.
- 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 – suctioning, tube feeding, physio, OT, SALT etc.
Check out this video by Uber for the sort of footage we are looking for.
- Film in landscape, not portrait.
- 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.
If you have any questions please email [email protected] – we will be closed between Friday 18 December and Monday 4 January so if you get in touch during this time we will reply as soon as we reopen.
Rare Disease UK is a campaign run by the charity Genetic Alliance UK. Registered charity numbers 1114195 & SC039299.