ReflectionBio - By Patients, For Patients · Jun 5, 2020 · 5:30 AM UTC

ReflectionBio - By Patients, For Patients

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HL retweeted

ReflectionBio - By Patients, For Patients@ReflectionBio5 Jun 2020

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

Invincible Vision@Invisionbcd3 Jun 2020

‘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

ReflectionBio - By Patients, For Patients · Jun 12, 2020 · 1:36 PM UTC

HL retweeted

ReflectionBio - By Patients, For Patients@ReflectionBio12 Jun 2020

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…

Bietti's crystalline corneoretinal dystrophy: a cross-sectional study - PubMed

The present study is the first to assess BCD prevalence in a population of retinitis pigmentosa patients, to describe clinically and angiographically its evolution from first symptom to legal...

pubmed.ncbi.nlm.nih.gov

ReflectionBio - By Patients, For Patients · May 18, 2020 · 12:57 PM UTC

HL retweeted

ReflectionBio - By Patients, For Patients@ReflectionBio18 May 2020

Replying to @bone7ess @red_dragon25 @konichiwakitty

ReflectionBio is developing a gene therapy for Bietti's Crystalline Dystrophy (BCD).

Gene Therapy Net · Jun 23, 2020 · 6:38 AM UTC

HL retweeted

Gene Therapy Net@genetherapynet23 Jun 2020

Gene Therapy Analytical Development Europe 1-3 September, BST | Online event. ter.li/2oekdd

7th Gene Therapy Analytical Development Summit Europe 2026

Join Europe’s leading meeting for analytical development, QC, CMC, and potency strategies in gene therapies to meet evolving regulatory expectations.

genetherapy-analytical-europe.com

ReflectionBio - By Patients, For Patients · Jun 18, 2020 · 3:57 AM UTC

HL retweeted

ReflectionBio - By Patients, For Patients@ReflectionBio18 Jun 2020

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…

ReflectionBio - By Patients, For Patients · Jun 22, 2020 · 12:48 PM UTC

HL retweeted

ReflectionBio - By Patients, For Patients@ReflectionBio22 Jun 2020

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

IRDiRC@irdirc18 Jun 2020

🆕 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

HL · Dec 20, 2019 · 1:28 AM UTC

HL@bone7ess20 Dec 2019

Cherish every moment of life... grateful for every waking moment that the sights are still clear... blindness is a time bomb... enjoy for current movement...

HL · Sep 19, 2018 · 12:21 AM UTC

HL@bone7ess19 Sep 2018

To my younger self.. Not to trust easily... stay away from men as far as you can... Especially those that lies all the times! YOLO

HL · Jun 20, 2018 · 2:40 PM UTC

HL@bone7ess20 Jun 2018

Good Bye Singapore... See U in 5 yrs later...

HL · May 14, 2018 · 10:05 AM UTC

HL@bone7ess14 May 2018

I feel so disgusted with all the lingo you guys are using now. Totally disgusted with it. Amazingly you can still you those lingo with her. I’m so amazed by you.