On February 29, 2024, Rare Disease Day, we invited people across the world who are impacted by rare health conditions, or who are connected with the rare health community, to contribute a personal video or audio recording and be part of a unique, collective film.
We’re delighted to present here the edited 14 minute film, ‘A Day of Rare Conditions’, which connects together a diversity of rare and special voices, people, places and moments recorded and shared from Brazil, China, Denmark, France, Finland, Germany, Italy, the Philippines, Romania, Spain, Switzerland, UK and USA.
With thanks to everyone who generously contributed their personal clips and audio recordings.
We hope you enjoy the film!
A Day of Rare Conditions, 14:14 mins., 2024
Edited by Nick Jordan
Soundtrack score by Otis Jordan
Commissioned by Rare/D, The Whitworth Group, The University of Manchester
Audio & video footage by:
Nour Ayad, Graciel Canoy, Jacob Cartwright, Mariana Castiñeiras, Tallulah Rose Clark, Abelone Dreyer, Mariangels Duch Ferrer, Aleix Duch Ferrer, Daniel Ferrer, Minerva Ferrer, Elena Garcia, Romer Julaton Guerbo, Fatima Hamid, Carol Tina Howells, Nick Jordan, Aapo Koistinen, Rhona MacLeod, Ramona Moldovan, Mari Nieminen, Mahmoud Odeh, Jay Roche, Annike Schneider, Tamsin Scott, Samira El Shaer, Trif Stefan, Chapman Sum, Jie Qiao, Tao Wang and anonymous contributors.
The film is 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:
