DEBRA is pleased to be partnering with Our Future Health, a new collaboration between the public, charities like DEBRA, and private sector organisations to build the UK’s largest health research programme.

The objective of this collaboration is to help people live healthier lives for longer through the discovery and testing of more effective approaches to prevention, earlier detection, and treatment of diseases.

Our Future Health aims to recruit up to five million adult volunteers from across the UK. They will ask these volunteers to provide information, including health records, and samples that they will then combine to create a more comprehensive picture of health and wellbeing that could be relevant to help understand what changes people’s risk of disease.

By combining multiple sources of health and health-related information, including genetic data, Our Future Health aims to calculate disease risk scores for those people participating, and based on these risk profiles, they hope to be able to better target those individuals who are at a higher risk of developing a certain disease. 

Every adult (people aged 18 years and older) living in the UK is eligible to join Our Future Health, including people with pre-existing health conditions such as EB. By taking part participants will be supporting new discoveries that could help people live healthier lives for longer and they will have the chance to find out more about their own health and future risk of disease. 

Commenting on this new partnership, DEBRA Director of Research, Dr Sagair Hussain said:

DEBRA is pleased to be partnering with Our Future Health. As a national research charity and patient support organisation for people living with a rare condition, we constantly face challenges in securing the support we need because of the relatively small number of people affected by EB, and this is true for many thousands of rare conditions. Data is key and it offers the potential to unlock future treatments for EB from existing treatments for other conditions, and vice versa, this is why we are pleased to be able to share our knowledge and expertise to this programme as an affiliate partner. We are hopeful that this programme will help identify future treatments for EB, lead to the earlier detection and hopefully prevention of other conditions for people living with EB and raise much needed awareness of EB.

To find out more about Our Future Health or to register to participate in the programme, please visit the Our Future Health website.