Updated: Apr 6
London UK, 28th February 2023 – My life, my genetics project, undertaken by RARE Youth Revolution, an initiative by RARE Revolution Magazine. Supported by Breaking Down Barriers, Illumina, Genomics England and Films for All, the project aims to provide education to a youth audience on the matter of genetics and relationships in the context of rare disease. The project shares the voices of young people with rare diseases on topics they feel are important to them and the youth community such as; genetic counselling, family planning and genetic inheritance.
This project was coordinated by RARE Youth Project Intern Katie Callaghan, with help from young people living with rare diseases. The project consists of a six-part video series along with a range of other engaging and informative materials, such as educational youth-friendly leaflets and infographics.
Inspiration for the project came from the RARE Youth Revolution team, who highlighted the lack of accessible and youth-friendly content available on matters related to genetics. Six young individuals living with 5 different rare diseases have been involved in creating videos on the following topics: genetic inheritance, family planning, genetic counselling, newborn screening and prenatal screening. The team also gained special insight into the Illumina Laboratory, where footage will be used to show the process of a genetic test, bringing science to a youth audience.
Shirlene Badger, Head of Patient Advocacy, Illumina, said:
“Over half of those living with rare disease are children and young people. Genomics is driving a fundamental change in enabling diagnosis and explaining the symptoms that individuals experience. In an era where it is commonly accepted that best practice involves the inclusion of voices and perspectives of those with lived experience, we still very rarely see evidence of initiatives created for children and young people by children and young people. The ‘My life, my genetics’ project is an ambitious initiative that allows them to take the helm of these discussions about genomics and its’ impact and to provide resources that illuminate scientific processes in accessible formats.”
‘My life, my genetics’ was an extremely important topic to the youth project team, and it was vital that young people were at the forefront of the process. Collaborating with Films for All, the team were provided with valuable workshops to help them create a vision for the project, write educational and personal scripts, and to gain the skills needed to create their individual videos. The script writing was supported by Genomics England where they were able to work with professionals in the capacity of genetics, helping to aid the information provided within the videos.
Kate Harvey, Engagement Manager, Genomics England said:
“RARE Youth aims to power up the voices of young people with experience of rare conditions. Its new videos mean that those voices can be heard loud and clear, giving everyone an opportunity to learn more about genetics, genomics, and rare conditions”
The youth team hopes the project will bring valuable insight, educational and relatable content to the youth rare disease community along with serving as a useful and informative resource to both the general public, organisations and professionals working within rare disease.
Kerry Leeson-Beevers, Chief Executive, Alstrom Syndrome UK & Breaking Down Barriers said:
“It has been a pleasure to support the RARE Youth Revolution team to develop these genetics and relationships videos. We are sure these videos are going to be a great resource, especially as they have been co-created by people with lived experience. We can’t wait until they are released! The aim of Breaking Down Barriers (BDB) is to improve engagement and involvement with people from diverse and marginalised communities who are also affected by a rare/genetic condition. We are pleased to have had some involvement in this project and proud to have the RARE Revolution Magazine as part of the BDB Network.”
My life, my genetics project by RARE Youth Revolution will be formally released soon.
About RARE Youth Revolution
RARE Youth Revolution is an initiative by RARE Revolution Magazine. It is dedicated to powering up the voices of the youth rare disease community through its digital magazine platform, online presence and social media.
RARE Youth Revolution’s community continues to grow virtually and globally. If you are a young person interested in learning more about RARE Youth and ways to contribute, please visit rareyouthrevolution.com or contact the team at email@example.com.
About RARE Revolution Magazine
RARE Revolution Magazine is an independent not-for-profit publication dedicated to elevating the voice of the rare disease community through its magazine, online presence and social media. It produces high-quality articles to support disease awareness and education across stakeholders, sectors and geographies. Featuring compelling voices and leading emerging conversations, RARE Revolution Magazine plays its part in turning the tide for rare disease.
RARE Revolution Magazine’s community continues to grow virtually and through its global networks and ecosystems. To find out more about joining the #RARERevolution visit rarerevolutionmagazine.com or contact the team at firstname.lastname@example.org.
Becky Pender, RARE Revolution Magazine.
For media and interview enquiries please email: email@example.com