Thank you, Dr. Francis Glorieux

Thank you, Dr. Francis Glorieux, for more than 10 years of service as the Chair of the OIF’s Medical Advisory Council (MAC)!

As Chairman, Dr. Glorieux led the OIF Medical Advisory Council and volunteered his time and expertise to review OI Foundation publications, advise the OI Foundation on new research, speak at OIF events and conferences, and answer questions from the OI community. We are so thankful to Dr. Glorieux for his leadership and his commitment to children and adults living with OI. We are pleased to share that Dr. Glorieux will continue to serve as a member of the OIF’s Medical Advisory Council and the OIF’s Board of Directors. The OIF continues to be so grateful to Dr. Glorieux for all he does for the OIF and the OI community.

Click here to learn more about Dr. Glorieux.


Introducing OIF Medical Advisory Council Chair, Dr. Cathleen L. Raggio

We are pleased to announce that Dr. Cathleen L. Raggio will be the chair of the OI Foundation Medical Advisory Council (MAC) beginning July 1, 2023. Dr. Raggio is a pediatric orthopedic and spine surgeon who specializes in skeletal dysplasias (i.e., osteogenesis imperfecta), and scoliosis.

Dr. Raggio is affiliated with the Hospital for Special Surgery. She graduated from Weill Medical College of Cornell University and completed her orthopedic training at the Hospital for Special Surgery and the Alfred I DuPont Hospital for Children. She has been recognized for her outstanding work through numerous awards including the Castle Connolly 2023 Exceptional Women in Medicine distinction, awarded to those with exceptional leadership, expertise, and dedication in their respective fields. She conducts both clinical and basic science research as a clinician scientist.

As a longtime OI Foundation MAC member, Dr. Raggio has volunteered her time and expertise to review OI Foundation publications, and to advise the OI Foundation’s CEO, staff, and Board of Directors on the implications of new research discoveries and new medicines or treatments related to OI. She has been featured as an OI expert speaker at OIF National and Regional Conferences, Support Groups, Scientific Meetings, and more.

Being a MAC member is a great honor and responsibility. It is the best example of team work and  collaboration for a common purpose (advancement of care for the OI community) that I can imagine.” – Dr. Cathleen Raggio

Thank you, Dr. Raggio, for all of your contributions to the OI Foundation and OI community. We are honored to introduce you as the Chair of the OI Foundation Medical Advisory.


Air Quality Update

Many areas in the Northeastern US are experiencing hazardous air quality due to smoke from wildfires. Because OI impacts lung and respiratory health, it is important to check the air quality in your area and follow the guidance of your local officials. If you are in an affected area, please move activities indoors. If you must be outside, high-quality (N95 or KN95) masks are suggested. Visit for more information.

OI Research Update from Ultragenyx

Ultragenyx Pharmaceutical Inc. and Mereo BioPharma Group today announced data from the dose-selection Phase 2 portion of the Phase 2/3 Orbit study, showing that setrusumab significantly  increased bone production in OI-affected patients after only 3 months.

Click here to read the full article.

On June 5th, the Foundation received the following communication from Ultragenyx regarding the interim data of their Phase 2 study, Orbit.

Dear OI Advocates,

As our trusted partner in OI, we are excited to share with you an important update about the Orbit study, NCT05125809, on behalf of the Ultragenyx OI study team. As you may be aware, Ultragenyx is sponsoring Orbit, a global study to determine the safety and efficacy of setrusumab, UX143, in the treatment of OI. Setrusumab is a fully human monoclonal antibody that inhibits sclerostin. Sclerostin is a protein that causes decreased bone formation and increased bone resorption. By inhibiting sclerostin, the goal of setrusumab is to increase bone formation, strength and bone mineral density and, to a lesser extent, decrease bone resorption.

Orbit is a randomized double-blind placebo-controlled Phase 2/3 study in OI types I, III, IV patients aged 5 to <26 (N=219). Enrollment in the Phase 2 portion of the study was completed in February with 24 patients. Patients received setrusumab at one of two doses to determine the optimal dosing strategy for Phase 3. We are pleased to announce the interim results from Phase 2 portion of the Orbit study. Data from the pediatric cohort suggests a substantial benefit on bone formation within 3 months on setrusumab.

Across all patients evaluated, setrusumab significantly increased levels of serum P1NP, a marker of bone formation, and a significant and rapid bone-building effect in the lumbar spine. There have been no treatment-related serious adverse events observed in the study. Reported adverse events have been consistent with the anticipated safety profile for setrusumab based on previous trial and include infusion-related reactions, headache, and sinusitis. There were no safety-related differences observed between dosing groups or age groups. “It’s encouraging to see similar lumbar spine bone mineral density results at 3 months in children to what we saw in adults at 12 months using the same dose levels,” said Eric Crombez, M.D., chief medical officer at Ultragenyx. “We believe it suggests that growing bones are more dynamic, and we anticipate a greater effect on bone formation and strength in the younger subjects with immature skeletons.”

Having this data allows Ultragenyx to move forward to the pivotal Phase 3 portion of the global study. Phase 3 will include approximately 195 participants, randomized 2:1 to receive setrusumab or placebo. We are grateful to the patients, parents, and caregivers who contributed to this study. We couldn’t do any of this work without the support from the OI community! To learn more about Patient Advocacy at Ultragenyx and our commitment to the OI community, including the upcoming Phase 3 trial, please visit or reach out via

Thank you all for your support and trust in this work.

Jenny McCue
Jenny McCue, Executive Director OI patient advocacy and engagement