by Katie Nightingale | Jul 12, 2022 | Myrovlytis Trust Blog
The 11th European Conference on Rare Diseases & Orphan Products 2022 was held from 27th June to 1st July. We were delighted to attend and present at this event focused on putting rare disease policy into action. Over 840 participants from 61 countries came...
by Jazz | Jul 1, 2022 | Myrovlytis Trust Blog
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...
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 Nightingale 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...
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