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



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...
Announcing the Myrovlytis Trust grant awardees

Announcing the Myrovlytis Trust grant awardees

We are delighted to announce our current grant awardees, spanning the fields of Birt-Hogg-Dubé Syndrome (BHD) and osteosarcoma. The Myrovlytis Trust re-established grant giving activity in 2021, with the first round of funding decided upon by our grant review panel...
Announcing our new resource, Osteosarcoma Now

Announcing our new resource, Osteosarcoma Now

We are delighted to announce that this week marked the launch of Osteosarcoma Now (www.osteosarcomanow.org), a website dedicated to support, information and help finding treatment options for osteosarcoma patients and their loved ones worldwide. Osteosarcoma Now was...