Top Tweets for #ThinkBHD
Effie worked as a research nurse caring for people with #BHDSyndrome. In 2012 she volunteered to take part in a clinical study where they incidentally found that she had BHD.
Read her story here 👉https://t.co/iVcLrTEFD7
#RareDisease #MyBHDStory #ThinkBHD
Today is World #PneumothoraxDay and @Prof_Marciniak explains the causes of familial #Pneumothorax and the importance of genetic testing.
👇
#WPD2022 #WPD22 #ThinkBHD #Lungs #RareDisease #GeneticTesting
In this video, Stefan Marciniak, Prof. of Respiratory Science at the @Cambridge_Uni and Director of the NHS Familial Pneumothorax Rare Disease Collaborative Network explains what a #pneumothorax is and the genetic cause of lung collapse #WPD2022 #PneumothoraxDay"
@BHD_Foundation
We are delighted to be partnering with @pulseinfoframe to develop the BHD International Registry (BIRT), and look forward to the insights that will follow to benefit the #BHD community.
#raredisease #ThinkBHD #pneumothorax #kidneycancer #dermatology
We're proud to announce that @myrovlytis is joining our growing number of #RareDiseaseAdvocacy organizations. They are creating a #PatientRegistry for Birt-Hogg-Dubé using our registry platform.
#RealWorldData #RealWorldEvidence #BirtHoggDube https://t.co/8S8nGQVTIB
Our absolute pleasure to bring the #BHD community together for this. Huge thanks to @MedMol and team for all the help and encouragement! #RareDisease #BHDsyndrome #ThinkBHD
The report of our Seventh BHD international symposium: recent scientific and clinical advancement https://t.co/aTTgR9cxAw is out! Huge thanks to the researchers, clinicians & patients. Last but not least all the hard work from @BHD_Foundation.
Have you seen @M4RareDiseases Instagram today?
Learn about BHD here 👉https://t.co/3EusG9wHGW
#MedTwitter #ThinkBHD #M4RDMysteryMonday #BHDSyndrome
Doctors and Researchers! Get involved with today’s #M4RDMysteryMonday and help us to raise awareness for the rare disease Birt–Hogg-Dubé Syndrome by RTing and spreading the message #MedTwitter #ThinkBHD #DareToThinkRare
Learn about BHD here 👉https://t.co/yBnq3QFgBt
Dieke shares her BHD diagnosis journey, how she manages her condition and what advice she would give to others in our latest interview.
Read her story here: https://t.co/jcSD3xJW43
#BHDSyndrome #ThinkBHD #RareDisease
The Future of BHD Sessions 1 and 2 are now available to watch on our webpage.
Find out more here ➡️ https://t.co/iqQaG1pkn7
#ThinkBHD #BHD2021 #BHDSyndrome
Less than 100 days until #RareDiseaseDay and we are excited to be taking part in it! #BHDsyndrome #ThinkBHD
Join the Global Chain of Lights for Rare Disease Day!
Learn how you can light up a building in your area by downloading our building illuminations toolkit: https://t.co/9lJyGYDdkv
#LightUpForRare #RareDiseaseDay
Lenke was diagnosed with BHD after a collapsed lung during pregnancy. In this week’s interview, we discuss her pregnancy, genetic testing, IVF and more!
Watch it now: https://t.co/sZJX6vK0xM
#BHDsyndrome #RareDisease #Pneumothorax #ThinkBHD
Great opportunity for those with a #raredisease living in Scotland to get involved and share their views and experiences to help shape future policy and service planning
#BHDSyndrome #ThinkBHD
Read our latest blog post summarising a fantastic study showing that folliculin segregates the blood and lymphatic system.
Find out more here: https://t.co/Ebry6xKwO9
@YoshiakiKubota @MasayaBaba2
#BHDSyndrome #ThinkBHD #Pneumothoraces #LungCysts
Join us on January 15th for the next virtual Meet the Experts event.
Find out more here: https://t.co/5QromFFNFG
#BHDsyndrome #ThinkBHD
We hope you enjoyed the 2021 BHD Symposium. Do not worry if you missed it, you can read our report summarising the event here: https://t.co/0EengmPPao
#BHD2021 #ThinkBHD #BHDsyndrome
We would like to thank the speakers, chairs and attendees for making the 2021 #BHDSyndrome Symposium a huge success! We are so excited for the future of BHD research and can't wait for the next symposium!
We are looking for images of fibrofolliculomas to raise awareness of the skin symptoms of BHD. If you are interested in sharing your image please contact us at [email protected] to find out more. #BHDsyndrome #ThinkBHD #RareDisease #Skinlumps #Fibrofolliculoma
What an absolute delight to bring together researchers, clinicians and patients for #BHD2021. We look forward to working with you all to usher in a new era for BHD in the future! #ThinkBHD @myrovlytis @BHDSyndrome
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