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June 22,2019 11am in Newark, Ohio Soft Bones patient meeting! This meeting is for any hpp patients, loved ones, and caregivers in the US! RSVP to [email protected] #OSU #RareDisease #HPPaware

Thank you Governor Mike DeWine for proclaiming May 4-11, 2019 as National OI Awareness Week in the state of Ohio! #UnbreakableSpirit #SHAREforAWARENESS

Don't miss the deadline to submit your poster abstract to the 4th Meeting of the International #FDMAS Consortium! Deadline for submissions are TODAY, April 30th! fibrousdysplasia.org/research/inter… … … RNOH Centre for Metabolic Bone Disease Rivista Italiana delle Malattie Rare Skeletal_Research_Group Association MASFD @ORDR ResearchAmerica U.S. Pain Foundation

Every study brings us one step closer to understanding the correlation between genotype and phenotype in #hpp sciencedirect.com/science/articl…

Authors of a new #JBMRPlus study report on the off-label use of denosumab to treat three pediatric patients with osteoclast #bone dysplasias. #openaccess #freetoread @WileyOpen ow.ly/rMJY50uKcIR

Supporting research is an important part of the OI Foundation’s mission. Your participation in current studies helps move OI research forward. To learn more about current OI studies, visit oif.org/RS_current

Adam Sherman, IFOPA's Director of Research Development & Partnerships, recently attended the Global Genes RARE Drug Development Symposium where his poster on the FOP Registry won "Top Poster." There's so much you can learn from our Registry. Learn more ifopa.org/fop_registry_a…

The OIF Regional Conference program brings resources and information to families and individuals affected by OI. We hope to see you at an upcoming OIF Regional Conference! Learn more at oif.org/RegionalConfer…

The OIF Regional Conference program is coming to Atlanta, GA; Sacramento, CA; and Wilmington, DE! Learn more or register today at oif.org/RegionalConfer…!

The OI Foundation and Rare Bone Disease Alliance are excited to announce the Rare Bone Disease TeleECHO Clinic Series! For more information or to register, visit oif.org/ECHO.

Looking foward to seeing everybody at our annual Soft Bones HPP patient meeting on July 13th in San Diego, California! #bringsunscreen #hypophosphatasia #softbones

Our 2019 Patient Meeting in La Jolla at Sanford Burnham Prebys A special thank you to Dr. Millan, Debbie Jeffery and the Sanford Burnham team for hosting us at their beautiful facility.

NEW OIF PODCAST EPISODE: Rodding Surgery and OI Dr. Maegan Wallace, Pediatric Orthopedic Surgeon at childrensomaha joined us on the OIF Podcast to discuss Rodding Surgery and OI. youtube.com/watch?v=GPwejC…

New #Review in #JBMRPlus concentrates on the miRNA‐mediated regulatory mechanisms of osteoblast, osteoclast, and osteocyte and their contribution to bone remodeling. #openaccess #freetoread @WileyOpen ow.ly/ldca50v25q2

On May 29, 2019, the IFOPA organized a FOP Rare Disease-Listening Session at the U.S. Food & Drug Administration. The goal of the Listening Session was to provide FDA officials with the experiences, perspectives, needs & treatment for those living w/ FOP. ifopa.org/fda_wrap_up

Do you know a healthcare professional that wants to know more about FD/MAS? Rare Bone Disease Alliance is hosting a series of clinical, telementoring presentations and FD/MAS expert, Dr. Mike Collins will present on Nov 7th! learn more here: oif.org/site/PageServe…

The second Rare Bone Disease TeleECHO Clinic session will take place tomorrow! For more information or to register, visit oif.org/ECHO. Rare Bone Disease Alliance

September is #craniosynostosis awareness month. Craniosynostosis is common with #hypophosphatasia patients as the soft bones in the skull close prematurely, causing pressure on the brain which can often be detected through measuring the optic nerve pressure. #BeHPPAware

Upcoming event in Houston, TX OI Can: Current Management, Research, and Resources for Osteogenesis Imperfecta Tuesday, September 17, 2019 6:30pm Light Refreshments 7:00-8:15pm Seminar For Information and Registration visit alturl.com/tzcyt or call 713-798-8407

September is Chiari Malformation Awareness Month. A chiari malformation is a common condition in which brain tissue extends into the spinal canal, present at birth. It occurs when part of the skull is abnormally small or misshapen. #chiarimalformation #hypophosphatasia #hppaware