Our Story & Mission

Hidden Genes Visible Voices CIC is a community interest company dedicated to advocacy, awareness, and support for individuals and families living with rare genetic conditions. Founded by those with direct lived experience, we understand that rare conditions are often invisible to the wider world — but the impact on those affected is profound and daily.

Established in the United Kingdom and operating as a not-for-profit, we reinvest all surpluses into projects that serve our community. We champion inclusivity, visibility, and the power of lived experience, giving a platform to those whose stories too often go unheard.

What We Do:

Our work spans three core areas:

Advocacy & Policy

We engage with policymakers, healthcare professionals, and public bodies to influence positive change for individuals living with rare genetic conditions. We ensure that patient voices are not just consulted but actively shape clinical guidelines, service design, and funding decisions.

Awareness & Education

Many rare genetic conditions remain poorly understood — even within healthcare settings. We develop and share educational resources for patients, families, healthcare professionals, and the general public, reducing diagnosis delays and improving the quality of care people receive.

Community Support & Connection

We build and sustain a network of support for those affected by rare genetic conditions — connecting individuals and families with each other, with relevant services, and with opportunities to participate in advocacy and research. No one should navigate a rare condition alone.

Our Mission

To amplify the voices of those affected by rare genetic conditions, drive systemic change in healthcare and policy, and build a community where no family faces the journey alone.

Our Values

• Visibility — We believe every rare condition, and every person affected by one, deserves to be seen and heard.

• Lived Experience — We are led by and for those with direct experience of rare genetic conditions. This is our greatest strength.

• Equity — We are committed to addressing the health inequalities that disproportionately affect marginalised and under-served communities.

• Collaboration — We work in partnership with healthcare professionals, researchers, charities, and public bodies to multiply our impact.

• Empowerment — We equip individuals and families with the knowledge, tools, and confidence to advocate for themselves and others.

• Transparency — As a not-for-profit, we operate with openness and accountability to our community at all times.