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

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 vision and aims of the Myrovlytis Trust, as well as highlighting two of our newly launched projects; Osteosarcoma Now and the BHD Syndrome International Registry (BIRT).

The episode, entitled “Forging a Path in Rare Disease Research” can be reached here.

We hope you enjoy listening to the podcast and would like to thank Colby and the team at Patient Worthy for the invitation.