Top Tweets for #softboneshpp
This 4th of July, show your support for the HPP community with our Soft Bones Beach Towel Fundraiser! Every towel purchased helps fund the Soft Bones Third International Scientific Meeting in New York City this November.
Order today:
https://t.co/dm67a8uUIm
#SoftBonesHPP
What happens when the voices in your head and symptoms become too unbearable to ignore? Change. Read Amanda's powerful story of perseverance, diagnosis, and the challenges that followed.
Read below:
https://t.co/ue7q5LMrvz
#SoftBonesHPP #HPPCommunity #PatientoftheMonth
Looking for a space that truly understands life with HPP?
We have not one but two opportunities to connect in July!
Join us on July 16, 2026, at 8 PM Eastern. https://t.co/fRhBa86onL
Join us on July 23, 2026, at 3 PM Eastern. https://t.co/be1kS5LMRs
#SoftBonesHPP #HPPANDME
What an incredible weekend of learning, connection, and inspiration at the 2026 Soft Bones National Patient Meeting! A HUGE thank you to Dr. J. Carl Pallais, Dr. Timothy Wright, Dr. Donna Griffin, and Dr. Sun Peck for sharing their expertise on #hypophosphatasia.
#SoftBonesHPP
Rise and shine!
Thank you to everyone who attended our Meet and Greet. We had a terrific turnout! Now, our attendees are getting ready for a jam-packed day!
Check out the agenda below.
https://t.co/pHU2rGiLnN
#SoftBonesHPP #HPPCommunity #NPM2026 #hypophosphatasia
Today is # WorldHPPDay! Itโs our chance to shine a light on this rare disease. To everyone living with HPP or affected by it, we stand together to:
๐ฃ Raise awareness
๐ Share our story
๐ฆ Make the HIPPO in the room seen
Get involved!
https://t.co/OuCt8Kiy6y
#SoftBonesHPP
HPP is still grossly underdiagnosed and overlooked. While alkaline phosphatase (ALP) testing is available in simple blood panels, low levels of ALP arenโt deemed problematic. Check your ALP levels.
Learn more below.
https://t.co/07K27c9uXf
#SoftBonesHPP #WorldHPPDay
The Soft Bones team is headed to Seattle for the 2025 ASBMR Annual Meeting from September 5-7.
Our theme this year is 'Shine a Light on HPP'. We have some new resources and opportunities to share. Come visit us!
#SoftBonesHPP #hypophosphatasia
Studies show that children with #hypophosphatasia are at an increased risk for ADHD. March is Developmental Disabilities Awareness Month where we recognize the achievements and rights of individuals with disabilities and promote inclusivity in all areas of life.
#SoftBonesHPP
Today is #WorldPneumoniaDay. Hypophosphatasia can lead to pneumonia, especially in infants and children. Underdeveloped chest and ribs can cause breathing issues and a higher risk of lung infection.
Learn more below.
https://t.co/PIRQA77w1m
#SoftBonesHPP #raredisease
Thank you to everyone who joined us for our Halloween Open House! Our next #HPPANDME Zoom Chat will be held on November 21st at 1 PM Eastern. Connect and chat with fellow HPP members.
Registration is required. Register below!
https://t.co/srKEun71tC
#SoftBonesHPP #raredisease
Friendly Reminder!
Tune in tomorrow at 7:30 AM Eastern for a second chance to watch "Behind the Mystery of Hypophosphatasia" on Lifetime featuring Deborah Fowler, Cindy Reasor, and other guests. https://t.co/YZu4G8du80
#SoftBonesHPP #HPPCommunity #BehindtheMystery #RareDisease
Letโs input our data together!
Join us for our next Appy Hour on Wednesday, November 13th at 3 PM Eastern. Together we can manage HPP. Registration is required. Please register below.
https://t.co/riaIb9mCVN
#SoftBonesHPP #HPPCommunity #myHPP #AppyHour #RareDisease
Soft Bones, in collaboration with Green Room Communications, has won the Ragan PR Dailyโs 2024 Nonprofit Communications Award for its PR Campaign on a Shoestring Budget. The award recognizes our 2023 #WorldHPPDay campaign.
#SoftBonesHPP #HPPCommunity #raganPRawards
Did you know that today is National Patient Advocacy Day? Patient advocacy allows patients to have a voice. It keeps patients more medically informed, helps to reduce anxiety, and protects their rights.
How do you advocate for yourself and others?
#SoftBonesHPP
Can you believe the National Patient Meeting is here? We canโt wait to see you!
A huge thank you to the many volunteers who helped get us ready!
View the agenda here: https://t.co/kl4Cw7yYNo
#SoftBonesHPP #HPPCommunity
It's World Autoimmune/Autoinflammatory Arthritis Day. It highlights diseases where the body attacks its own immune system. HPP can hide behind these diseases, leading to misdiagnosis and delayed care. Early detections and access to appropriate care is critical.
#SoftBonesHPP
Rare Disease Day was a success! Thanks to all who shared and raised awareness. The Soft Bones team gathered with NORD and other organizations. Share your #RareDiseaseDay experience below or email [email protected]. Your content could be in our Spring newsletter!
#SoftBonesHPP
Cannon S. shares his HPP journey as the December Patient of the Month.
Read his story by clicking the link below:
https://t.co/gTDC5mID0N
#patientofthemonth #HPP #HPPjourney #SoftBonesHPP #inspiration #patientstories
Thanks to @SoftBonesHPP for awarding us this grant. These funds will be used to improve the understanding of the respiratory phenotype in HPP patients
#SoftBonesHPP #WorldHPPDay
On World HPP Day, we are thrilled to announce Claire Stenhouse, PhD, Penn State University, as the 2023 Soft Bones Research Grant winner! These funds will be used to better understand the mechanisms of underlying respiratory complications in HPP.
#WorldHPPDay #SoftBonesHPP
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