Birt Hogg Dube Family Alliance

Does someone in your family have BHD?

When you find out that your family has or may have the Birt Hogg Dube syndrome, you may have a lot of questions. Maybe you'd like to find some information that you can share with your family. Maybe you'd like to talk to someone else who has the syndrome, to share your experiences and to learn from their story.

The Birt Hogg Dube (BHD) Family Alliance has been formed as a source of information and contact for those who are affected by or interested in the genetic Birt Hogg Dube, or Birt-Hogg-Dube, syndrome.

Life-sized fibrofolliculomas

What are the signs that are indications of Birt Hogg Dube? You might have a collapsed lung, skin bumps/fibrofolliculomas, or kidney cancer, or a combination of these. Others in your family may have had similar symptoms, or you may seem to be the first.

INAUGURAL BHD SYMPOSIUM
Roskilde, Denmark
September 3, 2008.

We look forward to the opportunity for those interested in BHD to meet in sessions that will present research and clinical aspects of the syndrome..

Roskilde is located on a beautiful fjord approximately one hour west of Copenhagen and is accessible by public transportation, rental car or taxi. It is a city with a rich cultural history that goes back to 998; it was the original capitol of the country. Vikings sailed the fjord and the Viking Ship Museum houses five original Viking ships. Roskilde Cathedral is a UNESCO World Heritage site and the burial place of Danish royalty.
The city has many walking streets with shops and boutiques.

This BHD Symposium will be held the day before the VHL Symposium 2008 (http://vhl2008.dk/). Both meetings will be held at the Comwell Conference Center, which overlooks the fjord. Roskilde was chosen as the conference site due to the affordability and accessibility of the conference site and housing,

Accommodation for the night of Sept. 2 is at the Scandic Roskilde, while from Sept. 3 there are rooms available at the Comwell conference center.

To register for the symposium, go to the BHD registration site

UPDATE:

INAUGURAL BHD SYMPOSIUM

SEPTEMBER 3, 2008 ROSKILDE, DENMARK

To register, use the link listed above.

The Symposium will be held at the Comwell Conference Center in Roskilde.

The Birt Hogg Dube Family Alliance has teamed with the Myrovlytis Trust (http://www.myrovlytistrust.org/h.aspx) to develop a comprehensive website about BHD syndrome. Both partners hope that the website will be the first point of reference for anyone interested in BHD syndrome - families, researchers, clinicians etc. The Myrovlytis Trust is funding BHD research and the Family Alliance is very pleased to have entered into this partnership. It will benefit all who are affected by or interested in BHD.

UPDATES

GET A FREE COPY OF INCIDENTAL FINDING! Thanks to the generosity of the editor of this book, we are able to offer you a copy, sent to you free of charge. The book recounts includes personal stories of kidney cancer patients, including one with the Birt Hogg Dube syndrome. It also features chapters written by medical professionsals about various aspects of kidney cancer. This is the second edition of the book, whch has received accolades from the kidney cancer community. Just enter your request for a copy in the comments section of the contact form. Remember to include a mailing address!