Community Resources

Name	Description
BHDSyndrome.org	Website that aims to be the first point of reference for anyone interested in BHD syndrome.
Birt Hogg Dube Family Alliance	American-based patient organisation – the only known patient organisation for BHD syndrome, globally.
Myrovlytis Trust	Medical research charity, founded in 2007 in London. Aims to promote research into rare genetic disorders. Focusing initially on BHD syndrome. Activity in its first twelve months includes: 1. Funding several basic research grants 2. Helping to organise the Inaugural BHD Symposium 3. Facilitating the creation of the European BHD Consortium More information on its website.

Name

Description

Website that aims to be the first point of reference for anyone interested in BHD syndrome.

American-based patient organisation – the only known patient organisation for BHD syndrome, globally.

Medical research charity, founded in 2007 in London. Aims to promote research into rare genetic disorders. Focusing initially on BHD syndrome. Activity in its first twelve months includes:

1. Funding several basic research grants

2. Helping to organise the Inaugural BHD Symposium

3. Facilitating the creation of the European BHD Consortium

More information on its website.

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Birt-Hogg-Dube Syndrome