The operating system for patient groups
Joined December 2022
- Tweets 24
- Following 10
- Followers 11
- Likes 16
5 Photos and videos
27 Sep 2024
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
1
30
27 Sep 2024
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!
1
1
312
13 Mar 2023
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=PL…
2
35
28 Feb 2023
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
37
Comend retweeted
28 Feb 2023
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
6
310
620
69,944
25 Feb 2023
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/d41586-0…
#Equality #healthcare
15
17 Feb 2023
Tonight, we saw a green CN Tower for World Cholangiocarcinoma Day (February 16th). 🧵(1/3)
1
1
24
17 Feb 2023
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/2…
(2/3)
1
1
21
17 Feb 2023
To learn more and get involved, check out:
cholangiocarcinoma.org/
globalccaalliance.com/en/get…
#WorldCCADay #PledgeforCCA
(3/3)
20
8 Feb 2023
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/2023/02/07/info…
#caregiver #caregiving #Disability #DisabilityTwitter #DisabilityRights #Georgia
1
20
Comend retweeted
29 Jan 2023
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)
94
703
7,363
654,446
3 Feb 2023
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…
#RareDisease #RareDiseaseTruth #rarediseases #Pfizer #Caregiver #caregivers #Caregiving
7
1 Feb 2023
Comend Caregiving -- The Caregivers Behind: Stephen Hawking comend.substack.com/p/the-ca…
1
7
29 Jan 2023
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/el…
11
25 Jan 2023
WSJ Highlights the high turnover, low pay, and extra training issues caregivers face in America. We need to continue building awareness!
wsj.com/articles/high-turnov… via @WSJ
5
5 Jan 2023
Comend Caregiving -- The Caregivers Behind: Muhammad Ali and Parkinson's Disease comend.substack.com/p/the-ca…
18