Developing a BHD Patient Voice

One of the more resounding messages that came out of the recent IKCC meeting (see last blog) was the power of proactive rare disease communities, and how patient advocacy groups can use this to inform new research. The benefits don’t stop there though. We know that BHD Syndrome is rare, so very often a BHD … Read more

1st International Conference for Organizations Representing Patients with Kidney Cancer

Last weekend the Myrovlytis Trust attended the 1st International Conference for Organizations Representing Patients with Kidney Cancer in Frankfurt, Germany. The meeting, organised by the International Kidney Cancer Coalition, brought together a global community of patient advocacy groups, cancer survivors, clinicians and researchers to discuss how best to support individuals effected by kidney cancer. Overall … Read more

Resource: Familial Cancer Syndromes

Familial Cancer Syndromes is a relatively new online resource that can be found here. As the title suggests it provides detailed scientific information on several  inherited syndromes, more specifically there is now a chapter on BHD Syndrome that researchers and the general public may find useful. I find it reassuring to see references to BHD … Read more