Comend

Check out our Instagram for more highlights from today's event! @comendcare

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. youtube.com/playlist?list=…

@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💙

It's #RareDiseaseDay! Today is all about raising awareness and generating change for the 300 million people worldwide living with a rare condition, their families and carers. Keep an eye out on our feeds throughout the day – @GeneticAll_UK @rarediseaseuk #CareForRare

@NHSEngland Sending love and best wishes to Ruben and his family! @rarediseaseday #RareDiseaseDay #RareDiseaseDay2023 #RareDisease #RareDiseases

On #RareDiseasesDay Eleanor and Atsushi thank NHS teams across the country who saved baby Rueben's life with a groundbreaking national genetic testing service rolled out by the NHS in October last year. Read more about their story. ▶️ england.nhs.uk/2022/10/world-…

@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!

HAPPY RARE DISEASE DAY!! 😍🩺🦓 Do you have your stripes at the ready?! 🌈🌈Today we are asking you to #showyourstripes for #rarediseaseday ALL DAY to raise awareness for those living with rare conditions! Remember to tag us @M4RareDiseases!!

@Niamhofsynnott @NoonanSyndrome1 Raising awareness for you and yours!

Today is rare diseases day. Over 300 million people around the world live with a rare disease. Here is my Beautifully Rare lady. Living her best life.....always! #RareDiseaseDay2023 @NoonanSyndrome1

@ashgrayfussell Go Carlee! Wishing you and yours the best :)

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: cutt.ly/98d6NtE ✨ Join the Global Chain of Lights & #LightUpForRare: cutt.ly/zPlxnHb 📖 Share your story: cutt.ly/s8d612W 🔥 Share our resources: cutt.ly/M8d69nH

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. nature.com/articles/d4158… #Equality #healthcare

To learn more and get involved, check out: cholangiocarcinoma.org globalccaalliance.com/en/get-involve… #WorldCCADay #PledgeforCCA (3/3)

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: businesswire.com/news/home/2023… (2/3)

Tonight, we saw a green CN Tower for World Cholangiocarcinoma Day (February 16th). 🧵(1/3)

According to the CDC, there are about 7 potential caregivers per adult. By the year 2030 that will drop to 4. @gpbnews gpb.org/news/2023/02/0… #caregiver #caregiving #Disability #DisabilityTwitter #DisabilityRights #Georgia

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)

Pfizer cutting development of a few orphan drugs sucks, especially amidst record profits from the pandemic. But let's see if their reinvestment strategies pay off! fiercebiotech.com/biotech/rd-sti… #RareDisease #RareDiseaseTruth #rarediseases #Pfizer #Caregiver #caregivers #Caregiving

Comend Caregiving -- The Caregivers Behind: Stephen Hawking comend.substack.com/p/the-caregive…

E-caregivers are a thing! Time will tell if they really take off, but @ElectronicCare has launched a caregiving avatar for remote patient monitoring. healthcareitnews.com/news/electroni…