We are launching a new article series that offers a window into rare diseases research with this issue of the Spotlight newsletter. Over the coming year, we will highlight the progress, people, and plans of our network and its 20 consortia.
We will tell the story of each consortium’s work from their perspective: How the team was formed, what they’re working on now, and where they hope their journey will take them. The voices of researchers, patients, and patient advocates will be featured.
The Rare Diseases Clinical Research Network fosters collaborative research. We are working to better understand how particular rare diseases progress and to develop improved approaches for diagnosis and treatment. Our 20 active consortia are teams of patients, scientists, and clinicians working together, each focused on a group of related rare diseases.
Today’s issue spotlights the Brain Vascular Malformation Consortium, which has been part of RDCRN since 2008, and the Brittle Bone Disorders Consortium, formed in 2014.
We invite you to read these articles and share them with others. If you’re on social media, the hashtag #RDCRN will help you find, follow, and contribute to this conversation.
Mustafa Sahin, MD, PhD, Boston Children’s Hospital
Principal Investigator, Developmental Synaptopathies Consortium
Chair, RDCRN Communications Working Group