Day 2 at @GlobalGenes#WeekInRare, and we’re feeling so empowered by the incredible sessions and conversations from leaders, advocates, and changemakers in the rare disease community!
#RAREAdvocacySummit
We're so happy to be at @GlobalGenes#weekinrare!🦓 Ready to listen, learn, and connect with caregivers, patient advocates, and YOU!
✨Find us for a free sticker, and let’s connect!
This year, @OsmosisMed is running "Year of the Zebra". Every week will focus on educating the public on a unique rare disease, including a video on their YouTube channel. I guarantee they talk about at least one rare disease you haven't heard of.
https://t.co/Q65LxkZHlQ
@rarediseaseuk@GeneticAll_UK A couple more harder to find stats: Every year, we discover a couple hundred more rare diseases based on publishing data. Also 1 in 2 rare diseases don't have a foundation or a support group! Thanks for raising awareness on #rarediseaseday💙
@M4RareDiseases For those curious, the Zebra is a mascot for rare disease because “Doctors are taught 'when you hear hoofbeats, think horses not zebras'". Occam's razor is useful to avoid misdiagnosing a patient, but sometimes the explanation for a symptom or condition is indeed a rare disease!
It's Rare Disease Day!
“Doctors are taught 'when you hear hoofbeats, think horses not zebras'". But Sometimes the explanation for a condition is indeed a rare disease. Retweet if you believe Zebras DO exist!
#rare#awareness#rarediseaseday#caregiving#raredisease
It is now #RareDiseaseDay across the globe 🌍
📌 Organise and post your event: https://t.co/sJVn3Abluk
✨ Join the Global Chain of Lights & #LightUpForRare: https://t.co/S0PNzbafDo
📖 Share your story: https://t.co/2rRw6PkmA1
🔥 Share our resources: https://t.co/Z7orXgz02q
DEI In clinical studies is a great first step in moving towards a more equitable healthcare system. We'll see how this might mitigate measurement bias, design more culturally aware studies, and regain some trust in our institutions.
https://t.co/ARxDADg9Gk
#Equality#healthcare
Cholangiocarcinoma, or bile duct cancer, is a rare condition affecting nearly 500 thousand individuals globally.
New targeted therapies are coming to market but accessibility poses a barrier - especially here in Canada. Read more here: https://t.co/0FIVw6jkel
(2/3)
Caregivers are real-life heroes.
They tend to our sick and elderly, a physically and emotionally draining job, and rarely get the appreciation they deserve.
I've seen this myself and can tell you without a doubt: we owe them our admiration and gratitude.
(PS Love you mom)
E-caregivers are a thing! Time will tell if they really take off, but @ElectronicCare has launched a caregiving avatar for remote patient monitoring.
https://t.co/3ROlsD3r01