The Reconnect Project

Who we are

The Reconnect Project is a patient-led health-equity organisation giving under-represented communities a voice in rare disease. We are starting with ATTR V122I, a hereditary heart condition strongly associated with African ancestry. Effective treatments are now NICE-recommended, so diagnosis is the bottleneck. Our work is to find people who are missed, listen to them, build evidence, advocate and help change the pathway. We will begin with a small advisory group, community interviews, and a plan to publish our first findings within a year. We may extend to other conditions such as Fabry disease, where Black patients are also under-represented in diagnosis. We are a registered charity in the UK and have some additional work (advocacy) in addiction treatments, education & health disparities in developing nations/communities.

Our culture and values

• Patient-led: people with lived experience guide our priorities, and we pay community members for their time.
• Independent: funders do not control our advocacy positions, patient data, research conclusions or publications. Material funders are published and conflicts of interest are managed.
• Evidence-based: we cite sources and are careful about what the evidence does and does not show.
• Respectful and safe: we work in ways that are culturally sensitive, confidential and clear.
• Practical: we start small, test what works and say so honestly.

Equality, diversity and inclusion policy

Our mission exists because Black and other under-represented communities are under-recognised, under-diagnosed and rarely heard in rare disease. Equality, diversity and inclusion are therefore the work, not an add-on. We welcome applications from people of all backgrounds, and especially from Black, Asian and minority ethnic people and those with lived experience of rare disease. We recruit on skills, experience and values, and decisions are made against agreed criteria.