We are so happy to be restarting our efforts at the BHD Foundation, and we are here to support patients, fund research and raise awareness of BHD.
February 2021 Newsletter
We are so happy to be restarting our efforts at the BHD Foundation, and are here to support patients and raise awareness of BHD. We have several exciting plans for 2021 including a virtual BHD symposium and we are so excited to get to know you all.
We want to provide a platform for patients, families and friends, where your voices can be heard.
Rare diseases day is coming! We will be posting about BHD syndrome on social media and taking part in the conversations over the weekend - join us!
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Help us raise awareness of rare diseases by adding our facebook frame to your profile picture!
The National Registry of Rare Kidney Diseases (For UK patients only)
The National Registry of Rare Kidney Diseases (RaDaR) is a Renal Association initiative designed to pull together information from patients with certain rare kidney diseases. Current recruitment is limited to BHD patients from Cambridge but there are plans to open up to other genetics centres later in the UK this year. If any patients are keen to be involved sooner rather than later please contact Professor Eamon Maher who will arrange for one of the team to get in contact and recruit to the registry remotely.
#Rareis Scholarship Fund (For US patients only) The EveryLife Foundation for Rare Diseases has established the #RAREis Scholarship Fund – to enrich the lives of adults living with rare diseases by providing support for their educational pursuits. Thanks to the support of Horizon Therapeutics RAREis, one-time awards of $5,000 each will be granted to up to 32 recipients for the Spring 2021 semester. Learn more and apply.
Can you help us expand our registry of BHD healthcare professionals?
We are currently updating and expanding our registry of healthcare professionals across the world who have knowledge of BHD. The aim is to have a comprehensive resource that allows you to easily find your nearest BHD doctor. We would love your recommendations. If you have seen a healthcare professional with experience of BHD and would recommend them to others, please complete the below survey.
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.
We are excited to announce that this year we will be hosting regular virtual live events where you can meet BHD experts. These events will give you the opportunity to hear about the latest research, doctors’ experiences treating BHD and ask your own questions about BHD.
We would love to know which BHD expert you are keen to meet.
Please click on the link below to vote on a BHD expert you would like to meet.
A freely available review of Birt-Hogg-Dubé syndrome was published in late 2020 by Romain Lazor's group in Switzerland. In this article the authors summarise the clinical features, diagnosis, genetics and treatment of BHD syndrome, and suggest that greater awareness of this disease in chest physicians would aid diagnosis. Read the article here
The American Society of Clinical Oncology (ASCO)meeting recently took place, and a group of doctors got together after the meeting to tell us what was discussed and how it could impact patients. Hear from them in this special webinar.
In the next newsletter we will take a closer look at the latest research on folliculin, unravelling the molecular pathways involved in BHD syndrome.