Top Tweets for #softbonesHPP
Friendly reminder!
Registration for our in-person Central Region Meeting closes Nov. 29.
π
Dec. 12 | 10 AMβ12 PM MST π Parker, CO
Register π https://t.co/avCQCNk6Uk
#SoftBonesHPP #HPPCommunity
On #WorldPneumoniaDay, we recognize the importance of continued HPP research. Emerging findings are exploring how HPP may affect the lungs, immune system, and inflammation, helping us better understand HPP as a multisystem disease.
#SoftBonesHPP
Our first Young Adult Group Zoom is Nov. 12 at 8 pm EST! π
Ages 18β40 in the HPP community are invited to connect, share ideas and help shape future gatherings.
Register: https://t.co/yyekWLCzBP
#SoftBonesHPP
This weekend, HPP was the focus of an entire scientific meeting!
Thank you to the researchers, clinicians, speakers, moderators and sponsors who made the Soft Bones Third International Scientific Meeting possible. π
#SoftBonesHPP #HPPResearch
How can genetics help us understand why HPP affects people differently?
Today at the Soft Bones Third International Scientific Meeting, experts are exploring genotype, phenotype, mineralization, clinical practice and pain.
#SoftBonesHPP #HPPResearch
How can genetics help us understand why HPP affects people differently?
Todayβs Soft Bones Scientific Meeting explores genotype, phenotype, mineralization, clinical practice, pain and more through expert presentations and discussion.
#SoftBonesHPP #HPPResearch
The Soft Bones Third International Scientific Meeting begins tonight!
Weβre welcoming HPP clinicians and researchers from around the world to connect before two days of scientific sessions.
Joining us? Tag Soft Bones in your reception photos!
#SoftBonesHPP #HPPResearch
Living with HPP means small changes can matter. The myHPP app helps you track symptoms, reflect on your health, and contribute to HPP research through de-identified data.
Your experiences matter.
Learn more: https://t.co/yVFXbpCIJU
#SoftBonesHPP #myHPP
Today is World HPP Day! π
Hypophosphatasia (HPP) is a rare, inherited disorder that can affect people of all ages. Raising awareness can help more people recognize the signs and find answers.
Learn more: https://t.co/ifc2CfzvG6
#WorldHPPDay #SoftBonesHPP
Today is # WorldHPPDay! Itβs our chance to shine a light on this rare disease. To everyone living with HPP or affected by it, we stand together to:
π£ Raise awareness
π Share our story
π¦ 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 arenβt 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
Letβs 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 Dailyβs 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 canβt 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
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