HL retweeted
It is estimated that there are more than 100,000 patients in the world suffer from #BCD, i.e., have crystals in their eyes. @invisionbcd
‘Crystals in my eyes’ .. sounds beautiful and rare - true!! But also a symptom of #BiettisCrystallineDystrophy #BCD is a very rare blinding eye disease, often misdiagnosed.
#goingblind #retina #opthamologist #nocyee #bcdawareness #invinciblevisionorg
HL retweeted
BCD Misdiagnosis 1. This study by Swiss doctors suggested that Bietti's Crystalline Dystrophy #BCD is often misdiagnosed hence underdiagnosed. In this study, only 1 out of 6 BCD patients was correctly diagnosed initially.
pubmed.ncbi.nlm.nih.gov/1518…
HL retweeted
Gene Therapy Analytical Development Europe
1-3 September, BST | Online event. ter.li/2oekdd
HL retweeted
BCD Misdiagnosis 2: The clinical symptoms and findings on visual field testing and electrophysiologic studies in Bietti Crystalline Dystrophy #BCD are similar to those of other forms of retinal degeneration including Retinitis Pigmentosa (RP). ncbi.nlm.nih.gov/books/NBK91…
HL retweeted
ReflectionBio is proud to be part of the Orphan Drug Development Guidebook Task Force @IRDiRC. We are grateful for the opportunity to work closely with such a diverse group of orphan drug experts from different parts of the world. #RareDiseases #OrphanDrug
🆕 appointment of the #irdirc Orphan Drug Development Guidebook, today we discover the Technical Experts Affiliations that have work on this important project!
Thank you!
👉irdirc.org/activities/task-f…
#rarediseases
@SanRaffaeleMI @LeuvenU @Roche
