Oxford University videos to help families facing rare genetic conditions feel less alone
Researchers have created animated videos for parents to better understand their children's conditions
Families affected by neurodevelopmental disorders are being given new resources designed to help them better understand the conditions and feel less alone.
Researchers at the University of Oxford say one of the key aims of their new "Genes, Brains, and Breakthroughs" campaign is to provide accessible information for families who often struggle to find answers after receiving a diagnosis.
The project features 16 animated videos explaining complex scientific topics, including genetics, brain development and emerging treatments, in a way that is easier for non-specialists to understand.
Dr Narjes Rohani, a postdoctoral research associate in the Department of Paediatrics at the University of Oxford, said families frequently describe the diagnostic journey as isolating.
"It is a really challenging process of getting a diagnosis for children and it is a really lonely process," she said.
"We want them to feel that they are not alone anymore. There is information out there and science is progressing to bring hope to them."
According to Dr Rohani, many many spend years seeking a diagnosis before receiving reports filled with advanced medical terminology.
"Families have been saying that they hear a lot of scientific jargon that they don't understand," she said.
"They are really curious. They want to know about those symptoms. They want to know what's going on."
The campaign was developed with four patient advocacy groups, including three based in the UK, with families involved throughout the process.
Parents and carers helped researchers identify the questions they most wanted answered, reviewed scripts and ensured the finished animations were clear and easy to follow.
Dr Rohani said the videos are also intended for wider communities to use and be able to speak to families about their children.
"It is really important for public as well, because when parents are in communication with the public, clinicians, GPs and teachers, it is hard for them to explain their child's condition," she said.
"We hope that these animations help families to better understand about scientific advances and be confident in communicating with everybody around them."
The resources have already been shown to families at a conference in Edinburgh, where Dr Rohani said the response was overwhelmingly positive.
"It was amazing seeing how much they enjoyed them," she said.
"They had been hearing a lot about those scientific terms during the conference and then finally they went, 'Oh, now I understand what that means.'"
While the videos are primarily aimed at families, researchers also hope they will improve public understanding of neurodevelopmental disorders and encourage other scientists to make their work more accessible.
"Science is not supposed to be only for scientists," Dr Rohani added.
"Science is supposed to be for the people that we are working to support."
The videos will be shared through healthcare settings, schools, community networks and online platforms as part of efforts to improve awareness and understanding of rare neurodevelopmental disorders.