29th of February 2024 is International Rare Disease Day, and so on this unique day we are asking people around the world to capture a simple clip of something that means rare or special to them, and be part of a collective, crowd-generated film.
We are all fascinated by the way other people live their lives; how they cope with hardship and joy; what their pet looks like; what their favourite food is; what are some of the extraordinary and some of the more routine things they do.
We are particularly keen to see what a day looks like for people living with rare conditions, or you may be someone who has a connection with a family member who has a rare condition, or perhaps you are a scientist or a clinician working in this field – everyone is welcome.
To coincide with International Rare Disease Day, which aims to raise awareness and generate change for the 300 million people worldwide living with a rare condition, we thought we would celebrate the individuals, carers and families; the diverse lives we all lead; the things that make every single person on the planet rare.
How to be part of a Rare film
On the 29th Feb use your phone/camera to capture something special to you. Upload it, using the link below, by March 18. It could be you watch the rain drip from your olive trees, drive a 1970’s Honda, take your pet ferret for a walk on a lead on the beach, or just happen to live next door to a Llama farmer. It doesn’t have to be exotic though! It can be whatever you see as rare or special or just anything that is of interest to you on this particular day. You can also keep your clips anonymous, if you prefer.
The Whitworth Group’s artist-film maker Nick Jordan will be editing the submitted clips into a unique rare film for 2024, which we’ll be making freely available for all the community to stream, download, share and enjoy.
‘How to’ quick guide:
- Use a phone, tablet, or any video camera
- Film in landscape format (horizontal, not vertical)
- Clips can be as long or as short as you like
- With sound, or without
- Any language
- Can be credited or uncredited – if you prefer to be anonymous, just let us know in the notes when you upload your video.
Be as creative as you like. We look forward to seeing your video!
Make a note in your calendar and capture footage on Feb 29, 2024.
Between Feb 29 – March 18, upload your video clips here:
The film is being produced by the Whitworth Group, a multidisciplinary team working in the fields of genetic counselling, clinical psychology, documentary filmmaking, visual art, rare diseases, communications and narrative therapy, based at Manchester University NHS Foundation Trust and the University of Manchester.
This new collaborative film builds upon a series of projects the team have produced, including podcasts for the ESHG and short films, that present public conversations about rare conditions and what ‘rare’ means to us all.
The Whitworth Group’s aims are to bring together scientists, clinicians, artists and the public, to approach complex conversations in creative and collaborative ways.
The projects is produced thanks to the continued support of:
