Driving research, providing support and improving outcomes for rare disease patients and their families



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...
2021: A year in review

2021: A year in review

A week is a long time in politics, 3 months is a long time when we are cut off from society in covid times, and a year is…. just about enough time to reinvigorate a charity and embark on a new era it seems.      In January 2021, I had the great honour to be...