Hi friends, hours after my second dose of #Strensiq #hypophosphatasia #HPP, all is well. No symptoms or signs of a hypersensitivity reaction (reported in < 1% of patients). Nonetheless, I have my EpiPen at the ready (just in case). So far, so good… 🙏🏻💪🏻🦴
January 14, 2026 at 8:43 PM
Hi friends, hours after my second dose of #Strensiq #hypophosphatasia #HPP, all is well. No symptoms or signs of a hypersensitivity reaction (reported in < 1% of patients). Nonetheless, I have my EpiPen at the ready (just in case). So far, so good… 🙏🏻💪🏻🦴
A thread 🧵 on healthcare and advocacy.
As I embark on the next stage of my journey with #osteoporosis and #hypophosphatasia #HPP, I’m mindful of multiple aspects of this process that have grounded me and that I’d like to share with my friends.
As I embark on the next stage of my journey with #osteoporosis and #hypophosphatasia #HPP, I’m mindful of multiple aspects of this process that have grounded me and that I’d like to share with my friends.
January 12, 2026 at 2:10 AM
A thread 🧵 on healthcare and advocacy.
As I embark on the next stage of my journey with #osteoporosis and #hypophosphatasia #HPP, I’m mindful of multiple aspects of this process that have grounded me and that I’d like to share with my friends.
As I embark on the next stage of my journey with #osteoporosis and #hypophosphatasia #HPP, I’m mindful of multiple aspects of this process that have grounded me and that I’d like to share with my friends.
Good news, my friends. Today, I learned from #Alexion Pharmaceuticals ( #AstraZeneca Rare Disease) that I've been approved to start treatment with #Strensiq for #hypophosphatasia #osteoporosis. Soon, I'll learn from its distributing pharmacy the details on insurance coverage (hopefully, 100%). 🙏🏼
January 6, 2026 at 10:20 PM
Good news, my friends. Today, I learned from #Alexion Pharmaceuticals ( #AstraZeneca Rare Disease) that I've been approved to start treatment with #Strensiq for #hypophosphatasia #osteoporosis. Soon, I'll learn from its distributing pharmacy the details on insurance coverage (hopefully, 100%). 🙏🏼
Stay current on diagnosing and treating hypophosphatasia with expert guidance on emerging enzyme therapies and multidisciplinary care.
👉 View the on demand program: bit.ly/4sfJTQq
#CME #HCPEducation #RareDiseaseEducation #Hypophosphatasia #MedicalEducation
👉 View the on demand program: bit.ly/4sfJTQq
#CME #HCPEducation #RareDiseaseEducation #Hypophosphatasia #MedicalEducation
December 22, 2025 at 9:00 PM
Stay current on diagnosing and treating hypophosphatasia with expert guidance on emerging enzyme therapies and multidisciplinary care.
👉 View the on demand program: bit.ly/4sfJTQq
#CME #HCPEducation #RareDiseaseEducation #Hypophosphatasia #MedicalEducation
👉 View the on demand program: bit.ly/4sfJTQq
#CME #HCPEducation #RareDiseaseEducation #Hypophosphatasia #MedicalEducation
▶️ Neurological symptoms of hypophosphatasia: unifyrare.com/en/closing-t...
Programme initiated and funded by Alexion, AstraZeneca Rare Disease. Brought to you by COR2ED Medical Affairs. Intended for healthcare professionals only. M/GL/Med HPP/0101 | Dec 2025
Programme initiated and funded by Alexion, AstraZeneca Rare Disease. Brought to you by COR2ED Medical Affairs. Intended for healthcare professionals only. M/GL/Med HPP/0101 | Dec 2025
December 19, 2025 at 10:03 AM
▶️ Neurological symptoms of hypophosphatasia: unifyrare.com/en/closing-t...
Programme initiated and funded by Alexion, AstraZeneca Rare Disease. Brought to you by COR2ED Medical Affairs. Intended for healthcare professionals only. M/GL/Med HPP/0101 | Dec 2025
Programme initiated and funded by Alexion, AstraZeneca Rare Disease. Brought to you by COR2ED Medical Affairs. Intended for healthcare professionals only. M/GL/Med HPP/0101 | Dec 2025
#Hypophosphatasia across 3 generations – can you help make their dream a reality?
▶️ unifyrare.com/en/closing-t...
Programme initiated and funded by Alexion, AstraZeneca Rare Disease. Brought to you by COR2ED Medical Affairs. Intended for healthcare professionals only. M/GL/Med HPP/0099 | Dec 2025
▶️ unifyrare.com/en/closing-t...
Programme initiated and funded by Alexion, AstraZeneca Rare Disease. Brought to you by COR2ED Medical Affairs. Intended for healthcare professionals only. M/GL/Med HPP/0099 | Dec 2025
December 8, 2025 at 11:59 AM
#Hypophosphatasia across 3 generations – can you help make their dream a reality?
▶️ unifyrare.com/en/closing-t...
Programme initiated and funded by Alexion, AstraZeneca Rare Disease. Brought to you by COR2ED Medical Affairs. Intended for healthcare professionals only. M/GL/Med HPP/0099 | Dec 2025
▶️ unifyrare.com/en/closing-t...
Programme initiated and funded by Alexion, AstraZeneca Rare Disease. Brought to you by COR2ED Medical Affairs. Intended for healthcare professionals only. M/GL/Med HPP/0099 | Dec 2025
Huge congratulations to Dr. Victoria DeMambro, recipient of the 2025 Soft Bones Maher Family Research Grant for hypophosphatasia! This grant will support her research to understand underlying causes of muscle weakness & chronic fatigue symptoms in adult HPP patients
lnkd.in/eutXHxNK
lnkd.in/eutXHxNK
December 4, 2025 at 3:21 PM
Huge congratulations to Dr. Victoria DeMambro, recipient of the 2025 Soft Bones Maher Family Research Grant for hypophosphatasia! This grant will support her research to understand underlying causes of muscle weakness & chronic fatigue symptoms in adult HPP patients
lnkd.in/eutXHxNK
lnkd.in/eutXHxNK
Adult Hypophosphatasia in a Middle-Aged Patient With Recurrent Fractures: Prevention of New Fractures With Asfotase Alfa. Read more in #JCEMCaseReports: bit.ly/4pocyAk #adulthypophosphatasia #asfotasealfa #alkalinephosphatase @endocrinesociety.bsky.social
Adult Hypophosphatasia in a Middle-Aged Patient With Recurrent Fractures: Prevention of New Fractures With Asfotase Alfa
Abstract. Hypophosphatasia (HPP) is a rare inherited bone disorder with systemic symptoms, which vary depending on the time of onset and other factors. It
bit.ly
December 1, 2025 at 3:37 PM
Adult Hypophosphatasia in a Middle-Aged Patient With Recurrent Fractures: Prevention of New Fractures With Asfotase Alfa. Read more in #JCEMCaseReports: bit.ly/4pocyAk #adulthypophosphatasia #asfotasealfa #alkalinephosphatase @endocrinesociety.bsky.social
Inorganic pyrophosphate disrupts amorphous hydrated bone mineral interfaces in hypophosphatasia https://www.biorxiv.org/content/10.1101/2025.11.24.689921v1
November 28, 2025 at 2:47 AM
Inorganic pyrophosphate disrupts amorphous hydrated bone mineral interfaces in hypophosphatasia https://www.biorxiv.org/content/10.1101/2025.11.24.689921v1
Inorganic pyrophosphate disrupts amorphous hydrated bone mineral interfaces in hypophosphatasia https://www.biorxiv.org/content/10.1101/2025.11.24.689921v1
November 28, 2025 at 2:47 AM
Inorganic pyrophosphate disrupts amorphous hydrated bone mineral interfaces in hypophosphatasia https://www.biorxiv.org/content/10.1101/2025.11.24.689921v1
🎥 Suspect and diagnose #hypophosphatasia (#HPP) in a video series on the Closing the Gap in HPP Care website: buff.ly/COjJT0R
Programme initiated and funded by Alexion, AstraZeneca Rare Disease. Intended for healthcare professionals only. M/GL/Med HPP/0067 | October 2025
#MedEd
Programme initiated and funded by Alexion, AstraZeneca Rare Disease. Intended for healthcare professionals only. M/GL/Med HPP/0067 | October 2025
#MedEd
November 17, 2025 at 12:02 PM
🎥 Suspect and diagnose #hypophosphatasia (#HPP) in a video series on the Closing the Gap in HPP Care website: buff.ly/COjJT0R
Programme initiated and funded by Alexion, AstraZeneca Rare Disease. Intended for healthcare professionals only. M/GL/Med HPP/0067 | October 2025
#MedEd
Programme initiated and funded by Alexion, AstraZeneca Rare Disease. Intended for healthcare professionals only. M/GL/Med HPP/0067 | October 2025
#MedEd
Presenting REC-102: Preclinical in vivo updates for a potential ENPP1 inhibitor for the treatment of hypophosphatasia (HPP). Results of the study have been published in the Journal of Bone and Mineral Research.
👉 Read the paper: academic.oup.com/jbmr/advance... #HPP #ENPP1 #TechBio
👉 Read the paper: academic.oup.com/jbmr/advance... #HPP #ENPP1 #TechBio
November 12, 2025 at 3:29 PM
Presenting REC-102: Preclinical in vivo updates for a potential ENPP1 inhibitor for the treatment of hypophosphatasia (HPP). Results of the study have been published in the Journal of Bone and Mineral Research.
👉 Read the paper: academic.oup.com/jbmr/advance... #HPP #ENPP1 #TechBio
👉 Read the paper: academic.oup.com/jbmr/advance... #HPP #ENPP1 #TechBio
November 12, 2025 at 2:47 PM
Presenting REC-102: Preclinical in vivo updates for a potential ENPP1 inhibitor for the treatment of hypophosphatasia (HPP). Results of the study have been published in the Journal of Bone and Mineral Research.
👉 Read the paper: academic.oup.com/jbmr/advance... #HPP #ENPP1 #TechBio
👉 Read the paper: academic.oup.com/jbmr/advance... #HPP #ENPP1 #TechBio
🎥 Watch expert and patient videos on #hypophosphatasia (#HPP) diagnosis on the new Closing the Gap in HPP Care website: buff.ly/COjJT0R
Programme initiated and funded by Alexion, AstraZeneca Rare Disease. Intended for healthcare professionals only. M/GL/Med HPP/0067 | October 2025
#MedEd
Programme initiated and funded by Alexion, AstraZeneca Rare Disease. Intended for healthcare professionals only. M/GL/Med HPP/0067 | October 2025
#MedEd
November 11, 2025 at 5:45 PM
🎥 Watch expert and patient videos on #hypophosphatasia (#HPP) diagnosis on the new Closing the Gap in HPP Care website: buff.ly/COjJT0R
Programme initiated and funded by Alexion, AstraZeneca Rare Disease. Intended for healthcare professionals only. M/GL/Med HPP/0067 | October 2025
#MedEd
Programme initiated and funded by Alexion, AstraZeneca Rare Disease. Intended for healthcare professionals only. M/GL/Med HPP/0067 | October 2025
#MedEd
Shortening the Rare Disease Odyssey through AI: An Innovation-Driven Call for Health Equity in Canada
https://www.newsbeep.com/ca/273556/
Jennifer, 53, could have been diagnosed and treated for hypophosphatasia, or HPP, at age three. The rare, inherited…
https://www.newsbeep.com/ca/273556/
Jennifer, 53, could have been diagnosed and treated for hypophosphatasia, or HPP, at age three. The rare, inherited…
Shortening the Rare Disease Odyssey through AI: An Innovation-Driven Call for Health Equity in Canada - Canada News Beep
Jennifer, 53, could have been diagnosed and treated for hypophosphatasia, or HPP, at age three. The rare, inherited and progressive metabolic disease, with
www.newsbeep.com
November 10, 2025 at 5:40 AM
Shortening the Rare Disease Odyssey through AI: An Innovation-Driven Call for Health Equity in Canada
https://www.newsbeep.com/ca/273556/
Jennifer, 53, could have been diagnosed and treated for hypophosphatasia, or HPP, at age three. The rare, inherited…
https://www.newsbeep.com/ca/273556/
Jennifer, 53, could have been diagnosed and treated for hypophosphatasia, or HPP, at age three. The rare, inherited…
⚕️🧵 Hi friends, my lengthy diagnostic evaluation into the cause of my #osteoporosis has reached its conclusion. This week, I met with my Endocrinologist, who confirmed the clinical diagnosis of #hypophosphatasia (HPP) — a rare disorder that causes poor mineralization of the skeleton.
(1/10)
(1/10)
November 1, 2025 at 1:39 AM
⚕️🧵 Hi friends, my lengthy diagnostic evaluation into the cause of my #osteoporosis has reached its conclusion. This week, I met with my Endocrinologist, who confirmed the clinical diagnosis of #hypophosphatasia (HPP) — a rare disorder that causes poor mineralization of the skeleton.
(1/10)
(1/10)
🦴 October 30 is #WorldHPPDay!
Let’s raise awareness for hypophosphatasia (HPP) — a rare bone disorder that affects many individuals world-wide. As researchers, joining our voices with affected individuals and caregivers amplifies our impact.
👉 softbones.org/world-hpp-da... #BoneHealth #HPP
Let’s raise awareness for hypophosphatasia (HPP) — a rare bone disorder that affects many individuals world-wide. As researchers, joining our voices with affected individuals and caregivers amplifies our impact.
👉 softbones.org/world-hpp-da... #BoneHealth #HPP
World HPP Day 2025 – Soft Bones
softbones.org
October 30, 2025 at 8:45 PM
🦴 October 30 is #WorldHPPDay!
Let’s raise awareness for hypophosphatasia (HPP) — a rare bone disorder that affects many individuals world-wide. As researchers, joining our voices with affected individuals and caregivers amplifies our impact.
👉 softbones.org/world-hpp-da... #BoneHealth #HPP
Let’s raise awareness for hypophosphatasia (HPP) — a rare bone disorder that affects many individuals world-wide. As researchers, joining our voices with affected individuals and caregivers amplifies our impact.
👉 softbones.org/world-hpp-da... #BoneHealth #HPP
Today is #WorldHPPDay!
#Hypophosphatasia is a rare genetic disorder that weakens bones and teeth, leading to deformities, fractures, premature tooth loss, and pain.
At rareLife, we bridge science and patient stories to drive better outcomes.
Learn more: www.rarelifesolutions.com
#WeKnowRare
#Hypophosphatasia is a rare genetic disorder that weakens bones and teeth, leading to deformities, fractures, premature tooth loss, and pain.
At rareLife, we bridge science and patient stories to drive better outcomes.
Learn more: www.rarelifesolutions.com
#WeKnowRare
October 30, 2025 at 4:05 PM
Today is #WorldHPPDay!
#Hypophosphatasia is a rare genetic disorder that weakens bones and teeth, leading to deformities, fractures, premature tooth loss, and pain.
At rareLife, we bridge science and patient stories to drive better outcomes.
Learn more: www.rarelifesolutions.com
#WeKnowRare
#Hypophosphatasia is a rare genetic disorder that weakens bones and teeth, leading to deformities, fractures, premature tooth loss, and pain.
At rareLife, we bridge science and patient stories to drive better outcomes.
Learn more: www.rarelifesolutions.com
#WeKnowRare
At the Institute for Advancement of Minority Health, we take pride in bringing light to Hypophosphatasia (HPP), a genetic bone disorder that can affect people of all ages and backgrounds.
Prevalence estimates for severe HPP in North America and Europe are ... #WorldHypophosphatasiaDay #HPPawareness
Prevalence estimates for severe HPP in North America and Europe are ... #WorldHypophosphatasiaDay #HPPawareness
October 30, 2025 at 3:21 PM
At the Institute for Advancement of Minority Health, we take pride in bringing light to Hypophosphatasia (HPP), a genetic bone disorder that can affect people of all ages and backgrounds.
Prevalence estimates for severe HPP in North America and Europe are ... #WorldHypophosphatasiaDay #HPPawareness
Prevalence estimates for severe HPP in North America and Europe are ... #WorldHypophosphatasiaDay #HPPawareness
Today is #WorldHPPDay
#Hypophosphatasia (HPP) is a #RareDisease that can impact working, connecting, and living independently
In the video (GL/UNB-H/0096), Suzanne & Amy share their HPP stories 📺
This material has been initiated and funded by Alexion Pharmaceuticals. 10/2025 GL/UNB-H/0095
#Hypophosphatasia (HPP) is a #RareDisease that can impact working, connecting, and living independently
In the video (GL/UNB-H/0096), Suzanne & Amy share their HPP stories 📺
This material has been initiated and funded by Alexion Pharmaceuticals. 10/2025 GL/UNB-H/0095
October 30, 2025 at 9:19 AM
Today is #WorldHPPDay
#Hypophosphatasia (HPP) is a #RareDisease that can impact working, connecting, and living independently
In the video (GL/UNB-H/0096), Suzanne & Amy share their HPP stories 📺
This material has been initiated and funded by Alexion Pharmaceuticals. 10/2025 GL/UNB-H/0095
#Hypophosphatasia (HPP) is a #RareDisease that can impact working, connecting, and living independently
In the video (GL/UNB-H/0096), Suzanne & Amy share their HPP stories 📺
This material has been initiated and funded by Alexion Pharmaceuticals. 10/2025 GL/UNB-H/0095
Tomorrow is #WorldHPPDay; it’s time to recognize the HIPPO in the room that is hypophosphatasia 🦛
softbones.org/world-hpp-da...
softbones.org/world-hpp-da...
World HPP Day 2025 – Soft Bones
softbones.org
October 29, 2025 at 8:55 PM
Tomorrow is #WorldHPPDay; it’s time to recognize the HIPPO in the room that is hypophosphatasia 🦛
softbones.org/world-hpp-da...
softbones.org/world-hpp-da...
ENPP1 Inhibition: A Promising Oral Therapy for Later-Onset Hypophosphatasia. VE MacRae. JBMR 23 Oct 2025 shorturl.at/1IOfg …comment on the findings of Narisawa JBMR 6 Oct 2025 shorturl.at/z92gE showing potential paradigm shift in the management of HPP
ENPP1 Inhibition: A Promising Oral Therapy for Later-Onset Hypophosphatasia
Vicky E MacRae; ENPP1 Inhibition: A Promising Oral Therapy for Later-Onset Hypophosphatasia, Journal of Bone and Mineral Research, , zjaf154, https://doi.o
shorturl.at
October 27, 2025 at 7:28 AM
ENPP1 Inhibition: A Promising Oral Therapy for Later-Onset Hypophosphatasia. VE MacRae. JBMR 23 Oct 2025 shorturl.at/1IOfg …comment on the findings of Narisawa JBMR 6 Oct 2025 shorturl.at/z92gE showing potential paradigm shift in the management of HPP
After years of not knowing what was going on in my body it has a name it’s Hypophosphatasia it is a rare inherited genetic mutation that affects every system of your body. #hpp #hypophosphatasia #genetic #mutation #DNA
October 24, 2025 at 11:33 AM
After years of not knowing what was going on in my body it has a name it’s Hypophosphatasia it is a rare inherited genetic mutation that affects every system of your body. #hpp #hypophosphatasia #genetic #mutation #DNA
Unraveling a Rare Genetic Disorder
https://www.europesays.com/uk/523326/
In a striking revelation in pediatric medicine, a recent case report has highlighted neonatal hypophosphatasia, an exceptionally rare…#uk #news #uknews
https://www.europesays.com/uk/523326/
In a striking revelation in pediatric medicine, a recent case report has highlighted neonatal hypophosphatasia, an exceptionally rare…#uk #news #uknews
Unraveling a Rare Genetic Disorder - United Kingdom
In a striking revelation in pediatric medicine, a recent case report has highlighted neonatal hypophosphatasia, an exceptionally rare genetic disorder that
www.europesays.com
October 23, 2025 at 11:30 PM
Unraveling a Rare Genetic Disorder
https://www.europesays.com/uk/523326/
In a striking revelation in pediatric medicine, a recent case report has highlighted neonatal hypophosphatasia, an exceptionally rare…#uk #news #uknews
https://www.europesays.com/uk/523326/
In a striking revelation in pediatric medicine, a recent case report has highlighted neonatal hypophosphatasia, an exceptionally rare…#uk #news #uknews
Unraveling a Rare Genetic Disorder
https://www.newsbeep.com/ca/235152/
In a striking revelation in pediatric medicine, a recent case report has highlighted neonatal hypophosphatasia, an exceptionally rare…
https://www.newsbeep.com/ca/235152/
In a striking revelation in pediatric medicine, a recent case report has highlighted neonatal hypophosphatasia, an exceptionally rare…
Unraveling a Rare Genetic Disorder - Canada News Beep
In a striking revelation in pediatric medicine, a recent case report has highlighted neonatal hypophosphatasia, an exceptionally rare genetic disorder that
www.newsbeep.com
October 23, 2025 at 7:50 PM
Unraveling a Rare Genetic Disorder
https://www.newsbeep.com/ca/235152/
In a striking revelation in pediatric medicine, a recent case report has highlighted neonatal hypophosphatasia, an exceptionally rare…
https://www.newsbeep.com/ca/235152/
In a striking revelation in pediatric medicine, a recent case report has highlighted neonatal hypophosphatasia, an exceptionally rare…