@Invisionbcd

A patient-led nonprofit and global community for Bietti’s Crystalline Dystrophy patients.

 Newark, California
invinciblevision.org
Joined March 2020
  • Tweets115
  • Following70
  • Followers40
81Media
Invincible Vision retweeted
Rare Disease Day@rarediseaseday6 Feb 2022
Do you want to get involved in #RareDiseaseDay 2022 but you don't know where to start? From sharing your story to lighting up a monument in your city, here is a helpful list of the different ways that you can get involved in Rare Disease Day 2022: cutt.ly/eOThYQs
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The Foundation supports and commends @becca_meyers for her bravery in standing up for herself and future generations. Becca continues to be an incredible role model for the vision loss, deaf-blind, and disabilities community. washingtonpost.com/sports/ol…
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Your testimony 📜 can help policy makers understand and empathise with the challenges faced by people living with a rare disease. 📣Take part in the @rarediseasesint 'Dear UN' campaign! rarediseasesinternational.or…
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Invincible Vision retweeted
Rare Disease Day@rarediseaseday7 Jun 2021
Why are rare diseases so difficult to diagnose? 🌀Wide range of symptoms 🌎Scattered expertise around the world 🧑‍⚕️Not easy for primary care professionals to choose the correct specialist Have you experienced any of these issues? Tell us your story! rarediseaseday.org/tell-your…
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Invincible Vision retweeted
Rare Disease Day@rarediseaseday18 May 2021
May is Healthy Vision Month 👁️, a moment to raise awareness of inherited retinal diseases, which affect an estimate of 1 in every 3000 people. 📝Share your story living with a retinal rare disease with us! #RareDiseaseDay rarediseaseday.org/tell-your…
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Invincible Vision retweeted
Rare Disease Day@rarediseaseday14 Apr 2021
Sometimes misdiagnosis happens because information on the condition isn’t available, other times it’s difficult to find someone knowledgeable enough to spot the signs 🕵️‍♂️ Some diseases are so rare that many doctors have never come across them. 👉rarediseaseday.org/page/news…
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People living with a #raredisease🧑 and their carers 👩‍⚕️are experts on the disease that affects them We need a new rare disease policy at the EU level, which would engage🤝, empower💪 & treat patients and carers as policy actors! #Rare2030 👉l.eurordis.org/SRP
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New #webinar: "Advancing Health #Equity: A Community Conversation for #RareDiseaseDay” on February 25 at 2:00pm ET. #ShowYourStripes #HealthEquity Register: bit.ly/3q8z0zd
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New #webinar: "Advancing Health #Equity: A Community Conversation for #RareDiseaseDay” on February 25 at 2:00pm ET. #ShowYourStripes #HealthEquity Register: bit.ly/3q8z0zd
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Invincible Vision retweeted
Rare Disease Day@rarediseaseday18 Feb 2021
10 days to go to RARE DISEASE DAY! 🎉 Excited? 🤩 Happy? 🙂... Still on time! DOWNLOAD the materials and share your story with us 👉rarediseaseday.org/tell-your… #RareDiseaseDay
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Invincible Vision retweeted
Rare Disease Day@rarediseaseday15 Feb 2021
For #RareDiseaseDay we need everyone to join the movement to redefine rare! More than 300 million people living with a rare disease, families & carers form the rare disease community 🌎 Rare is many. Rare is strong. Rare is proud. How will you redefine rare❓
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Invincible Vision retweeted
Rare Disease Day@rarediseaseday12 Feb 2021
What is #RareDiseaseDay? 🌎Rare Disease Day began in 2008 as an international campaign to raise awareness for people living with a rare disease. 🗓Rare Disease Day takes place on the last day of February each year with 100s of events held in +100 participating countries!
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#NORD invites you to share your story! We are looking for individuals and families to share their stories about #diversity and #equity in #raredisease. To submit your story, please visit our website and select "Rare Disease Day" from the drop down menu: bit.ly/2lMUeVS
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Invincible Vision retweeted
Rare Disease Day@rarediseaseday5 Feb 2021
📢 NEW! The official #RareDiseaseDay video is out NOW 🎉Watch the 6 real life stories and be inspired to join the 2021 campaign. 👥 Share this post with your followers using this hashtag #RareDiseaseDay
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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…
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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
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