Same But Different, a not for profit organisation, will launch The Rare Project on 26th February at Chester Zoo, using photography to showcase the personalities of young people and children with rare diseases.
Photographer and founder of Same but Different, Ceridwen Hughes, has worked with families over the last twelve months to build a gallery of images that really capture the person behind the rare condition.
The Rare Project encourages people to get to know young people and children with rare diseases for their personalities and not their condition.
‘It’s vitally important that we break down barriers and empower people to have a voice so the people behind rare diseases can be seen,’ said Ceridwen.
Rare diseases affect one in 17 people in the UK. They are far more common than many people imagine and so The Rare Project’ also hopes to raise awareness of the 6,000-8,000 rare diseases that exist.
Same But Different have recently partnered with Climb, a unique charity supporting families affected by over 700 Inherited Metabolic Diseases (IMDs) making up a large proportion of rare diseases.
Ceridwen’s son Isaac has the rare genetic disease Moebius, which results in paralysis of facial nerves. While his family could easily see changes in his expressions others were unable to, let alone capture them in photographs. Ceridwen sought to capture Isaac’s personality photographically, herself. Her success led her to create Same But Different and ‘The Rare Project’ featuring many young people and children with rare diseases.
You can see Isaac and many more photos at:
- Chester Zoo, from 27th February to 4th March
- All Nations Centre, Sachville Avenue, Cardiff on 29th February
- Heath Hospital, Cardiff from 2nd to 6th March
- Theatr Clwyd from 31st May to 18th June