Join up to the BHD Syndrome International Registry (BIRT)
April 2022 Newsletter
The BHD Syndrome International Registry (BIRT) is blossoming...... and the BHD Foundation Team are excited to see so many people using the new resource. We look forward to welcoming more members of the BHD Community over the coming months as new users of the registry.
Community News
Tweeter of the Month
This month we are featuring our BHD Syndrome International Registry partners Pulse Infoframe. Pulse Infoframe provide full solutions for registries and other similar studies. Their platform allows real-world evidence generation to support the patient journey and improve patient quality of life. We are delighted to have partnered with them to create the BHD Syndrome International Registry. Follow Pulse Infoframe on Twitter here.
Wait, how do you spell that?
We were thrilled to be invited to record an episode of “Wait How Do You Spell That?”, a podcast produced by Patient Worthy. Listen to the podcast to find out a bit more about the work we are doing to support research into BHD and raise awareness of the condition. Listen to our episode “ Forging a Path in Rare Disease Research, Feat. the Myrovlytis Trust” here.
Meet the Expert
Dr Ed Cowen, Senior Clinician and Head of the National Institutes of Health (NIH) Dermatology Consultation Service was our expert at our Meet the Expert event earlier this month. We were thrilled to have sold out the tickets to this event and want to thank everyone who registered!
We will also soon be announcing the next meet the expert event!
COVID-19 and BHD: A Patients Perspective
This month we interviewed Anna Marie about her experience having COVID-19 with BHD. We are pleased to hear she recovered well.
You can read her interview hereas well as some advice about COVID-19 and BHD from lung specialist Stefan Marciniak.
Get Involved
BHD Syndrome International Registry (BIRT)
We launched the BHD Syndrome International Registry at the beginning of this month. We are delighted that over 150 people have started the registration process in such a short space of time. We need as many people to get involved with the registry as possible, as there is strength in numbers! This is your chance to participate and accelerate research into BHD to better understand the condition, identify new potential therapies, and hopefully a cure.
Haven’t signed up yet? Find out more about the registry here or sign up using the button below. Our partners, Pulse Infoframe, have also created a handy user guide to help you through the process.
Watch the short video from our Charity Officer Katie Nightingale explaining the registry and how to get involved
Register for the 2022 BHD Symposium
Tickets are now available for the 2022 BHD community Symposium.
The event is specifically for the BHD community (people with BHD, their friends and family), featuring the latest science news, personal BHD stories, and a chance for the community to network and provide mutual support. A full programme will be available nearer the time!
The symposium is virtual, free of charge and will be taking place on Saturday 08 October 2022. The exact time will be confirmed soon.
The Kidney Cancer Association (KCA’s) is hosting a virtual conference on May 21st for patients and caregivers. This is an annual event where you can learn about kidney cancer from medical professionals and patient advocates.
This event is free and open to anyone. You can register here.
Science News
In addition to our blog posts about the BHD Syndrome International Registry (see above), we also highlighted some of the recent BHD publications.
We reported on a study investigating if there is any correlation between lung cysts and collapsed lungs in BHD. Read our summary of the paper here.
We also featured a round-up of some recent BHD case reports. Find out why we thought they were interesting by reading our blog post here.
