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



Immuno UK Conference Report

Immuno UK Conference Report

In September 2022, we attended the Immuno UK conference. Held over 2 days in London, UK, this conference brought together over 260 people from industry and academic research. We heard the latest updates in the field of “immune oncology”. This can be described as...
Sign Up for the Osteosarcoma Now Newsletter

Sign Up for the Osteosarcoma Now Newsletter

We are excited to announce that the first Osteosarcoma Now Newsletter (ONN) will be in your inbox on Friday 30th September. ONN will be published every 3 months and it aims to keep you informed about the latest osteosarcoma news. Each issue will discuss the current...
Join us as a Trustee

Join us as a Trustee

We are seeking to appoint new Trustees who have the experience to promote the charity’s vision, mission, and goals, and assist with strategy development to ensure the charity meets its financial, legal and governance obligations. We are in a period of reinvigorating...
World Pneumothorax Day 2022

World Pneumothorax Day 2022

On June 30th we celebrated World Pneumothorax Day (WPD) and raised awareness of the rare causes of collapsed lungs.  WPD was started in 2021 with the Myrovlytis Trust to mark the launch of the NHS Familial Pneumothorax Rare Disease Collaborative Network.  A...