Driving research, providing support and improving outcomes for patients and their families affected by rare conditions

We are delighted to announce the first group of our 2022 grant holders. After re-establishing the Trust’s grant giving activity in 2021, we were keen to build upon that success and expand our research portfolio. In 2022, we focused on 1 year projects and PhD studentships in our priority areas of osteosarcoma and Birt-Hogg-Dubé syndrome (BHD). We were also thrilled to fund our first project in the field of cell therapy.

The principal investigators have each produced a short video and summary explaining their work. We look forward to working with them throughout their grant to provide opportunities to engage with the rare disease community, other researchers and the public.

Osteosarcoma Research

Dr Wolfgang Paster, Children’s Cancer Research Institute, Vienna, Austria

The Immunopeptidome of Paediatric High-Grade Osteosarcoma

Find out more about Wolfgang’s research here.

BHD Syndrome Research

Professor Masaya Baba, Kumamoto University, Japan

CRISPR/Cas9 mediated unbiased genome wide screening to target both tumour cell autonomous and tumour microenvironmental factors in FLCN deficient RCC cells

Find out more about Masaya’s research here.

Cell Therapy Research

Professor Mark Lowdell, UCL, London

Assessment of Human NK Cell Responses and Potentiation in Patients with Renal Cell Cancer – Pre-clinical Study to Support a Phase 2a Clinical Trial

Find out more about Mark’s research here.

We look forward to announcing the remainder of our 2022 grant holders very soon! To hear more about our work, including our 2023 funding opportunities, sign up to our newsletter.