LifeArc has been funding rare disease research since 2019, committing more than £30 million in just four years.  Now, our commitment to rare diseases is not only continuing, but growing.

Our Rare Disease Translational Challenge will see us invest more than £100 million into rare disease research by 2030.

This investment will support the rare disease ecosystem to help bridge the gap between scientific discoveries and patient benefit, tackling some of the major obstacles facing rare disease translational science. Through fostering innovation and collaboration, we aim to accelerate the pace with which discoveries go on to significantly improve the lives and experience of people living with rare diseases.

Our approach

We will:

  • Support initiatives where our combination of our skills in translation and our investment can best unlock the potential of rare disease research and bring benefits to patients.
  • Invest in rare disease research infrastructure and infostructures that foster interdisciplinary collaboration, knowledge sharing and community building. No one will solve these challenges alone. We want to use our experience and expertise across the rare disease ecosystem to bring people together to maximise the potential of translational research.
  • Be patient-centric. We will continue to listen to the needs of patients and families and understand the challenges they face.
Our first initiatives

Translational Rare Disease Centres

Our Rare Disease Translational Challenge includes investing £40 million towards the creation of four or five new Translational Rare Disease Centres, which will become focal points for rare disease research translation, knowledge-sharing, and engagement with the patient community across the UK. The process to select these has now begun and we hope to announce the successful centres early in 2024.

Repurposing medicines for epidermolysis bullosa (EB)

We are also holding a joint £2.5 million call for projects with DEBRA Austria. This call is looking to find existing, well-evidenced treatments, that can be repurposed/repositioned for helping treat epidermolysis bullosa (EB) – a rare disease which causes fragile skin, resulting in tears, blisters, severe pain and wounds that struggle to heal. The call opens on 10 July and we hope to announce successful projects early in 2024. Our hope is that these repurposed treatments may also go on to help other rare skin conditions.

What next? 

We are going to continue to shape our strategy over the coming months. We will be taking a holistic view, scanning, listening and scoping to see where our expertise can add most value.

We need everyone – patients, charities, funders, researchers, industry and policy makers to continue to work with us and be involved in helping shape this strategy and our ongoing ambitious programme. By working together, we will ensure we maximise LifeArc’s investment and expertise, so that we can help get new innovations to people living with rare diseases, faster.