NRG Collective Limited is the home of Rare Revolution Magazine & Rare Youth Revolution. They received funding from BDB to support their Rare Youth Project and to work specifically with young people, aged 8 – 23 years who are affected by rare conditions. Through prior consultations and work carried out in partnership with The British Paediatric Surveillance Unit and The Royal College of Paediatrics, NRG Collective identified that young people felt under-represented and that their voices and opinions were not being heard.
Funding from BDB enabled them to:
- Create a platform where young people could create their own content for a digital magazine – within the first year, young people created over 40 articles and the website had 2734 sessions (average time spent on the site was 39 minutes). They also achieved a global audience – 1496 from the UK, 663 from the US, 126 from Italy, 88 from Canada, 43 from India and 318 from the rest of the world
- Provide opportunities for peer-to-peer support by combating isolation and providing a sense of belonging – managed to engage with a diverse group of young people
- Provide work experience and professional connections – launched their Illuminating Rare Talent programme providing short- and long-term work experience placements and NRG Collective appointed a Youth Coordinator
- Raise the youth agenda and support young people to share their views with policy makers, industry and researchers – established a partnership with TREND community and their first project was to find out where young people go to learn more about their condition and who they talk to about it
- Develop Genetics and Relationships explainer videos – topics include inheritance, consanguinity, pre-marriage screening, genetic counselling, and family planning.
The explainer videos have now been developed by young people for young people. The project is being led by the Youth Coordinator, with support of the NRG Collective team, Genomics England and Breaking Down Barriers.
Check these films out… they are simply fabulous!
Understanding My Genetics featuring Katie Callaghan and Illumina
Genetic Inheritance featuring Katrina Brooks
Genetic Counselling featuring Aoife Gavan
Family Planning featuring Sorcha McElchar
Prenatal Screening featuring Katie Callaghan
Newborn Screening featuring Chelsea Wong
‘The topic of cultural differences and young people with rare disease was raised in our recent over 12’s team meeting. Some members of the youth team raised the topic as they felt passionately there are still cultural barriers when it comes to raising awareness and getting young people from the rare disease community to engage and interact…..she wanted to focus on helping break the barriers in other cultures so the subject is less taboo. This project has allowed us to become truly representative of the rare disease community’
You can find out more about Rare Revolution and the Rare Youth Revolution via their websites: