Currently, the Trust focuses on Birt-Hogg-Dube syndrome, although it is also considering supporting new and existing initiatives that would benefit rare genetic disorders as a whole. Activities, as described on the homepage, include:
- BHD Symposia:
1.1. The Second BHD Symposium was held in April 2010, in Washington, DC, USA. Attended by more than sixty people, including several patients and family members directly affected by BHD Syndrome, the Symposium was organised by the Myrovlytis Trust and jointly funded by the Myrovlytis Trust and the NIH’s Office of Rare Disease Research.
1.2. The Inaugural BHD Symposium was held in September 2008 in Roskilde, Denmark. Funded by the Myrovlytis Trust, and jointly organised by the Myrovlytis Trust and the BHD Family Alliance, more than forty people attended from around the world, including all the main researchers whose work underpins what our current knowledge of BHD.
- >£2.5m worth of research grants have been awarded to date by the Trust. Grants include basic scientific research to increase our understanding of the molecular mechanisms underlying BHD syndrome, as well as the world’s first therapeutic clinical trial for BHD syndrome. The Trust does not fund ‘overhead’ on research grants. For information about some of the Trust’s current grants, see News; for details of the Trust’s scientific strategy and Scientific Advisory Board, see here.
- Supporting the European BHD Consortium – a network of clinicians and other researchers working on BHD syndrome. The Consortium currently has eleven members from seven countries. To date, meetings have been held in Amsterdam, Roskilde, Paris and London.
- BHDSyndrome.org has been developed jointly with the BHD Family Alliance. This website is intended to be the first point of reference for anyone interested in BHD syndrome – families, researchers etc.
- The first Myrovlytis Trust Scientific Thought-Leader Workshop was held at the Royal Institution, London, in August 2008. This small closed meeting of leading gene therapists and kidney specialists from around the world, aimed to identify current barriers to progress in the field of renal gene therapy and how to overcome them. As a consequence of the Workshop, the Trust is funding three renal gene therapy research projects.
- Awarding travel grants to enable scientists to attend a conference or to spend time collaborating in another laboratory (see Travel Grants for details). Several attendees of the BHD Symposia were supported in this way.