We did it! This month we held our first Meet the Experts event. Genetic counsellor, Lindsay Middelton answered your question about BHD and genetics.
April 2021 Newsletter
We did it!
A lot has been going on in April at the BHD Foundation, and we were delighted to meet so many of you online at the meet the expert event. There will be plenty for us to announce very soon so watch this space!
Community News
This month we held our first ‘Meet the Experts’ virtual event. Genetic Counsellor Lindsay Middelton shared her experiences working with BHD patients and answered your questions. Thank you to so many of you for joining us and getting involved. We are working our way through all the follow-up queries and will be in touch as soon as possible.
European International Kidney Cancer 2021 Symposium
We attended The European International Kidney Cancer 2021 virtual meeting in April, providing insights into clinical developments in renal cancer. The meeting was fascinating, and of note was the remarkable pace of research yielding new insights into treatments. We will be writing up a report of the event and have a news article available to read now.
A Patients Perspective
Debra, a member of the BHD community shared her experience being diagnosed and living with Birt-Hogg-Dubé Syndrome (BHD). The account discusses the challenges of being diagnosed correctly with a rare condition and how an incidental finding when being investigated for dizziness led to the diagnosis. Read it now.
Get Involved
Share Your Story
The BHD Foundation is dedicated to raising awareness of BHD and sharing your stories. We are looking for members of the BHD community who would be interested in taking part in a video interview about their experience for the BHD Foundation webpage.
To find out more contact us at contact@bhdsyndrome.orgwith the subject line ‘Video Interview’.
Can you help us expand our registry of healthcare professionals?
Thank you to everyone who has contributed to our expanding BHD healthcare professional registry. The questionnaire is still open so please let us know if there is a BHD healthcare professional who you would recommend.
You will be able to add the details of up to two healthcare professionals on the survey but can complete the survey as many times as you want.
Meet Another BHD Expert
We will very soon be announcing the next 'Meet the Expert' virtual event, which will be held in June, when we will focus on the lung.
We will announce the date on Social Media and the BHD Foundation Webpage, and of course will update you in the next newsletter.
Explainer Video
The BHD Foundation are currently working on an explainer video to help people better understand BHD, including newly diagnosed individuals. We are hoping this resource will provide information which is accessible to a wider audience and raise awareness of this rare and important condition.
Science News
Our most recent blog post summarises a freely available article by Dazé et al which describes a case of skin bumps leading to a diagnosis of Birt-Hogg-Dubé syndrome (BHD). 9 out of 10 of people with BHD develop pale bumps on their skin called fibrofolliculomas and they can be the first indication of BHD. Read it now
A freely available review was published in the Netherlands looking at the association between BHD and colon cancer. The authors studied a cohort of 399 BHD patients and compared the incidences of colon cancer with the other members of their family. They found no significant increased risk of colon cancer in BHD and that BHD patients a not require additional screening. We interviewed the researchers about their study to better understand it.
