Top Tweets for #RareBone
When patient advocacy and research come together, we move treatments out of the lab and into patients who need them.
Collaboration and partnership make change possible!
Really exciting day of breathtaking science and discovery @ASBMR
#PatientAdvocacy #RareBone
Amazing rare bone meeting @ASBMR with Smitha Jha @NIDDKgov n Jakob Hoppener @MGHBoneResearch
#PatientAdvocacy #RareBone
Thanks to @NIH for publishing the first-ever ocular findings in Jansen's Disease. Huge thanks to Smitha Jha from @NIDDKgov, @harvardmed @ncats_nih_gov for leading the way in Jansen's research.
https://t.co/rzgGPL24kt
#JansensDisease #NaturalHistory #RareBone #ClinicalResearch
Wr are rare patients. Of course, our first love will always be our researchers who work tirelessly for new treatments for our rare disease.
#RareDiseaseTruth
#TeamJansens
#RareBone
#ValentinesDay
@docsmita_jha @ncats_nih_gov @NIH @NIDDKgov @MGHBoneResearch @MGHMedicine
Amazing new program, "Thrive", encouraging underrepresented researchers in Bone! Apply now to be a part of this exciting program!
@ASBMR
#ASBMR2023 #diversity #inclusion #RareBone
Kicking off the @ASBMR conference with these bad-to-the-bone powerhouses! @MaryBouxsein
Excited to be here today at the beautiful Vancouver convention center with all these passionate researchers from around the bone.
#WomenInBoneRock #JansensDisease #RareBone
Looking forward to our families with #endocrine, #diabetes or #rarebone conditions getting involved with this process to contribute to the new hospital development ๐ #inthistogether
Have you attended any of the specialties below with your child or as a patient?
We'd would like to hear from you about your experience. For more info, read below โคต๏ธ
It's amazing to see all the incredible work being done to understand the mechanisms of the PTH receptor that regulates bone.
Grateful to the investigators looking to gain deeper insights that can help patients like us w Jansen's
#Inhibitiors #Agonsits #JansensDisease #RareBone
We will be moderating an ECTS-ISCBH workshop in conjunction with the European Rare Bone Forum this afternoon, 2 pm (GMT+1).
https://t.co/6pMBq9sZhM
#ECTS2023 #rarebone #erbf #brs2023 #Liverpool #rareboneorg
Not so Rare! 300 million people (5% of the world population) live with a rare disease. Out of these, more than 2 million live with rare bone conditions.
Know more๐ https://t.co/vhhqPFZAkm
#raredisease #rarediseaseday #rarediseaseday2023 #rarebone #rareboneconditions
Yesterday was #WomenInScience. Let's take a moment to also celebrate all the badass mamas (me in the white! ๐) stepping into the science realm as research partners, working collaboratively to pave the way for new treatments.
@ASBMR #RareBone
#RareDiseaseTruth #JansensDisease
We are kicking off #ECTSWebinar series on #rarebone diseases. Educational programme including case-based presentations and live discussions with key opinion leaders. More info https://t.co/jwojmm8a16. Thanks to @KyowaKirin_US and @IpsenGroup for supporting the initiative
Next up at #ECTS2021 hormones and bone symposium, followed by case-based discussion on hypophosphatemic rickets. Sessions available on demand until 31 August. #rarebone #paediatricbone #pediatricbone
Our two favorite PTs who work closely with our Jansen's kiddos - Reenee Donohoe @AIDHC and Penni Romero - wrote an excellent article on Post Surgical Physical Therapy for the @RareRevolutionM
#RareBone
Check it out!
https://t.co/OrTG88PiIP
Happy #DoctorsDay to the army of scientists and researchers working for therapeutic treatments for #Jansens
L-R Dr. Larry Suva, Dr. Harald Jueppener, Dr. Neena Nizar, Dr. Jack Martin, Dr. John Potts and Dr. Hiroshi Saito.
#RareBone #RareDiseaseTruth #DisruptiveChange
Today it's #HPPWorldDay to raise awareness of #rarebone disease #hypophosphatasia. How can you participate? Click on the image below, save it and use it as zoom meeting background. Plenty of other ideas and fundraiser at https://t.co/tw4poR00Nr Photo courtesy @AlexionPharma
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