Top Tweets for #BetterLifeFSHD
It can take 7+ years to receive an #FSHD diagnosis, even longer if you seek #GeneticTesting. Our recent blog looks at the burden of this diagnostic delay, comparing peer-reviewed research with information submitted by #BetterLifeFSHD participants.
https://t.co/IQGkTkdmcg
Ashley Ferreira, Director of Education, is onsite at the 2026 International Congress on Neuromuscular Diseases this week in Florence, Italy. If you're there, say hello & learn about how #BetterLifeFSHD and the FOCUS data warehouse can accelerate your #FSHDResearch.
#ICNMD2026
BetterLife is here to help you make informed decisions about your health.
Join today: https://t.co/tZX9jabyPy
#BetterLifeFSHD #FSHD #FSHDResearch #FSHMuscularDystrophy
When you join #BetterLifeFSHD, your real-life experience becomes part of a growing, trusted research platform. You’ll help change the future of how #FSHD is understood, treated & eventually cured.
Input today, impact tomorrow: https://t.co/ehLyBrQiwL
#EarlyOnsetFSHD
When you contribute to BetterLife, you’re not just helping research, you’re also kept informed. BetterLife updates you about the projects using your data, so you can see how you’re helping advance FSHD understanding.
Join today: https://t.co/tZX9jabyPy
#BetterLifeFSHD #FSHD
BetterLife FSHD has expanded to Canada! We're excited to announce this next phase in creating a more comprehensive understanding of #FSHD through patient-reported data.
If you live in Canada, you can enroll at https://t.co/dGSFSeL8DX
#BetterLifeFSHD #CureFSHD #FSHDResearch
May is #MentalHealthAwarenessMonth, a time to recognize that well-being includes both physical and emotional health.
Read more & find resources on our blog:
https://t.co/Qg2bpx2PrS
#FSHD #RareDisease #Neuromuscular #FSHDResearch #BetterLifeFSHD
"There are not many places where you find understanding of the disease progression peculiarities. #BetterLifeFSHD feels like a place that understands, shares, curates, listens & is contributing to the momentum FSHD is experiencing."
Join today: https://t.co/tZX9jabyPy
#FSHD
When you join BetterLife FSHD, your real-life experience becomes part of a growing, trusted research platform. Manage your FSHD and help change the future of how it’s understood, treated & eventually cured.
https://t.co/ehLyBrQiwL
#BetterLifeFSHD #EarlyOnsetFSHD #FSHDResearch
BetterLife is now listed as a recruiting study on https://t.co/CfYqSk9EiX. This listing increases visibility for the study and makes it easier for researchers and participants to learn about #BetterLifeFSHD & how the data collected through the platform can support #FSHDResearch.
Join part of a growing research community helping researchers & pharma partners understand what it means to live with FSHD—every day, over time, in real life.
Drive breakthroughs with your data. Join #BetterLifeFSHD: https://t.co/ehLyBrQiwL
#FSHD #EarlyOnsetFSHD #FSHDResearch
Last night, Kayleigh Worek & Amanda Hill presented research from our first year of running #BetterLifeFSHD at #MDAConference.
BetterLife #FSHD: One Year Descriptive Cohort Analysis covers demographics from the initial cohort of 481 adults & 16 youth.
#RareDiseaseResearch #MDA
Almost 1 year to date, Art Abrams went from podcast listener to podcast guest, #BetterLifeFSHD Ambassador, and Leader of the new Iowa Chapter. This heartfelt, artful episode is not one to miss.
https://t.co/4Xd0Jn8rSW
Email: [email protected]
#FSHD #FSH
FSHD Society staff are out and about at the annual #MDAConference. Stop by, say hello, & learn about our research, community programming, & #BetterLifeFSHD, our unique registry & patient portal.
We're excited to participate in this event bringing together #neuromuscular leaders.
With many individuals excluded from clinical trial data sets, BetterLife FSHD offers a powerful opportunity.
Share your data and increase our understanding of Early Onset FSHD.
Start contributing today: https://t.co/ehLyBrQiwL
#BetterLifeFSHD #EarlyOnsetFSHD #FSHDResearch
Announcing BetterLife FSHD's latest feature: Care Connector. We've integrated & improved our care finding tool:
🔍Search for & save providers
🌍Filter by specialty & location
✅Recommend & review providers
Our commitment: help you live your best life with FSHD.
#BetterLifeFSHD
BetterLife FSHD has a new look! With over 500 users and growing, the platform is evolving to reflect the progress we're making together.
Explore the new look at https://t.co/dGSFSeL8DX
#BetterLifeFSHD #FSHDSociety #PoweringThePathForward
You asked and we delivered. Head to our YouTube channel for a new BetterLife user tutorial!
https://t.co/iMN9sXDBg1
#BetterLifeFSHD #CureFSHD #FSHDResearch
With 2025 just begun, we're looking forward to new features in #BetterLifeFSHD. The more you participate, the more powerful the data becomes—pushing forward understanding and potential treatments for FSHD.
https://t.co/Dxa87oIGvK
#FSHD #FSHDResearch #CureFSHD
It’s tough to sort through endless information about FSHD. BetterLife brings you resources relevant to your specific health journey. We help you find answers without the hassle.
https://t.co/Dxa87oIGvK
#BetterLifeFSHD #CureFSHD #FSHD #FSHDResearch
Last Seen Hashtags on Sotwe
stw
Seen from Indonesia
minichat girl filter:videos
Seen from United States
หลุดนักเรียน
Seen from Thailand
swat #fetish
Seen from United Kingdom
smno
Seen from Germany
wetsaree
thingstodinnorthdevon
Seen from United States
githeri
Seen from United States
flavourchasiam
Seen from United States
j2r
Seen from United States
Trends for you
Most Popular Users
Elon Musk 
@elonmusk
241.7M followers
Barack Obama
@barackobama
119M followers
Cristiano Ronaldo
@cristiano
114.4M followers
Donald J. Trump
@realdonaldtrump
111.9M followers
Narendra Modi
@narendramodi
107.2M followers
Rihanna
@rihanna
98.7M followers
NASA
@nasa
92.4M followers
Justin Bieber
@justinbieber
91.8M followers
KATY PERRY
@katyperry
90M followers
Taylor Swift
@taylorswift13
84M followers
Lady Gaga
@ladygaga
75.4M followers
Virat Kohli
@imvkohli
73.4M followers
Kim Kardashian
@kimkardashian
70.9M followers
YouTube
@youtube
68.8M followers
Neymar Jr
@neymarjr
66.4M followers
Bill Gates
@billgates
65.2M followers
Selena Gomez
@selenagomez
63.1M followers
The Ellen Show
@theellenshow
62.3M followers
CNN
@cnn
61.8M followers
X
@x
60.7M followers