by Katie Nightingale | May 9, 2022 | Myrovlytis Trust Blog
The Myrovlytis Trust is delighted to announce that registration and abstract submission for the virtual BHD Community Symposium 2022 is now open! Following the success of our research symposium in 2021, the Myrovlytis Trust and BHD Foundation are delighted to announce...
by Anna | Apr 8, 2022 | Myrovlytis Trust Blog
In March the Myrovlytis Trust was invited to contribute our thoughts and experience to the rare disease podcast “How do you spell that?” run by our friends at Patient Worthy. In the podcast, CEO Anna Webb and Charity Officer Katie Honeywood discuss the...
by Anna | Mar 31, 2022 | Myrovlytis Trust Blog
We are delighted to announce the launch today of the BHD Syndrome International Registry (BIRT), in partnership with Pulse Infoframe. We want to reach a stage where there are treatments and eventually a cure for BHD. We believe that the BIRT registry is the first...
by Anna | Mar 28, 2022 | Myrovlytis Trust Blog
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...
by Anna | Mar 25, 2022 | Myrovlytis Trust Blog
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...
by Jazz | Feb 18, 2022 | Myrovlytis Trust Blog
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...
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