Osteogenesis Imperfecta BC Patient Advocate Erica Jane Beckstead

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Osteogenesis Imperfecta BC Patient Advocate Erica Jane Beckstead My son and I both have O.I. type 4. I provide resources for Canadians looking for free treatment through clinical trials & The Shriners. DM me for more info.

Get ready to attend next summers OI Convention in 2026 in Orlando, Florida. Bring community awareness about OI in our Community. Patient resources, support groups, and connecting you with the help you need thru Shriners and the OI Foundation, and Me.

Very interesting and a very good read for those who have OI type one
10/16/2026

Very interesting and a very good read for those who have OI type one

NEW REVIEW ARTICLE ON OI TYPE 1, SHOWING THAT THE LABEL MILD OI IS PROBLEMATIC
Kudos to the research team in Amsterdam, featuring our two advisory board members Dimitra Micha and Lida Zhytnik, with getting their review article on OI type 1 published in Nature Reviews.

70% of people with OI have OI type 1. However studies within the past 5 years reveal serious unrecognized aspects of disease impact in people with OI type 1, that contrast with its widely adopted classification as mild OI.

These patients present distinct clinical and molecular features, necessitating personalized clinical approaches and dedicated research.

The review article focuses on the diverse facets of clinical burden, genetic landscape, bone pathophysiology, disease models and emerging treatment options in OI type 1.

Owing to their later diagnosis, disease invisibility, increased mobility and uncharted clinical course compared with patients who have other types of OI, these patients and their treating physicians face distinct healthcare and diagnostic challenges - including the mental health impact of living with an invisible condition.

Link to article (behind paywall) here:
https://go.nature.com/3TfCUdv 🔒

Wow I’m gonna think about attending the this Oi international conference in Italy.
07/25/2026

Wow I’m gonna think about attending the this Oi international conference in Italy.

🇮🇹 ICOI2028 is coming to Italy!

We are thrilled to announce that the next International Conference on Osteogenesis Imperfecta (ICOI2028) will take place in Bologna, Italy!

Held every three years, the International Conference on Osteogenesis Imperfecta is the leading global scientific meeting dedicated to OI, bringing together clinicians, researchers and representatives of the OI community from around the world to exchange knowledge, present the latest research and advance the care of people living with Osteogenesis Imperfecta.
Following a successful edition in Hong Kong, the conference is now coming to Italy, where Antonella Forlino and Luca Sangiorgi will welcome the international OI community in 2028.

More information will be shared soon. We can't wait to welcome the global OI community to Italy!

New Clinical Trial in Portland Oregon The team of doctors at Oregon Health & Science University in Portland who provide ...
06/28/2026

New Clinical Trial in Portland Oregon

The team of doctors at Oregon Health & Science University in Portland who provide care for people with OI are conducting a study to determine whether a potential new treatment may increase bone mineral density, with the goal of improving bone strength and reducing fracture risk.
Participation includes several study visits involving bone health assessments, routine health evaluations, and study treatment. The study team will work closely with volunteers throughout, with careful attention to comfort, safety, and scheduling needs. Of course, all the costs of the study, including any travel, will be covered. Participants may receive up to $3100 for the study, plus up to an additional $500 for completion of high-resolution scans during visits.
Please see the flyer below for more details about the study.
If you are interested in learning more, please contact the study team at 503-494-4650 or [email protected].

Research study for USA residents.
04/16/2026

Research study for USA residents.

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Surrey, BC

Telephone

+17782334344

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