Osteogenesis Imperfecta Foundation

05/29/2026

The OI Foundation is at the Interdisciplinary Symposium on Osteoporosis meeting today with OIF MAC member, Dr. Laura Tosi and Dr. Kathryn Dahir to lead a session on Building Confidence in Providing Rare Bone Disease Care. "Our goal today is to empower providers to welcome patients with rare bone disorders." - Laura Tosi, MD

05/29/2026

Menopause & OI Survey – We Want to Hear From You!

This project is part of the OIF Adult Health Initiative and is being conducted through The Global Adult OI Initiative, an international collaboration of OI clinicians, researchers, and patient advocacy partners, including contributors from Osteogenesis Imperfecta Federation Europe (OIFE) and members of the OIF Medical Advisory Council. The survey was developed to better understand how menopause may impact women with OI—including symptoms, bone health, daily life, and access to care. Your input will help guide future research, resources, and care recommendations.

This survey is in English and open to women age 35+ with OI living anywhere in the world. Take the survey at https://ow.ly/I61z50Z4nvj

05/28/2026

Calling all performers!

Do you sing, dance, play an instrument, tell jokes, perform magic, or have another special talent you’d like to share? We encourage attendees of all ages to take the stage at the 2026 OIF National Conference Talent Show. Sign up today at www.oif.org/conference2026 under the Talent Show section.

Thank you to our Talent Show Sponsor, Children's Nebraska.

05/28/2026

Save the date - June 9 at 7:30PM ET!

Join the OIF as we discuss the National Conference program via Zoom on Tuesday, June 9 at 7:30PM ET. As the final call of the OIF National Conference Series, this call provides an opportunity to have any last-minute questions answered by veteran conference goers as well as make connections with this year's attendees prior to the big event.

Head to www.oif.org/confcall5 to register to attend!

05/27/2026

WOW! We have some new teams making big strides on the Walk-N-Wheel leaderboard. Keep up the great work! There's still time to get your team on the board, please visit https://givebutter.com/UnbreakableSpiritWalknWheel2026 to get started today.

05/26/2026

Check out this special event for Shriners Children's Chicago patients and their families!

LETS GET THIS PARTY STARTED- We turned 100 in 2026!!
PATIENTS & FAMILIES - Join us at Shriners Children’s Chicago 100th BIRTHDAY BASH on SATURDAY June 27, 10 am - 1 pm. Outdoor carnival for kids and families, in the hospital front yard, celebrates and honors 100 years of providing the MOST AMAZING care. Music, Games, Lunch, and a Shriners Parade. 100th BIRTHDAY BASH is special event for patients and their families—both current and past—and for Shriners and their families from the Shrine Centers that support our Chicago hospital. It is not open to the general public.
Registration: www.chi100birthdaybash.org. Come at 10am for family activities before the parade! Pre-registration REQUIRED | No hospital tours on June 27
HAPPY BIRTHDAY SHRINERS CHILDREN'S CHICAGO 🎂

05/26/2026

Are you ready for National Conference? Take a look at our May checklist to make sure you're on track for a successful Conference this July!

CONFIRM you're registered! Head to www.oif.org/conference2026 to double check that your registration has been completed.

SIGN UP for special programs like the Walk-N-Wheel, Talent Show, Women's Forum, and Camp Unbreakable Spirit!

SHARE your conference story with us. We'd love to hear your favorite stories from past conferences, or what you're most excited for at this conference. Send your story to [email protected] and you might just see it on our social media pages leading up to conference!

05/21/2026

Longtime friend of the OI Foundation, Dr. Jean-Marc Retrouvey, recently raised OI awareness by wearing his Unbreakable Spirit® gear while biking through Vietnam! Thank you, Dr. Retrouvey, for always supporting the OI community!

To order your own Unbreakable Spirit® gear and support the mission of the OIF, visit https://www.bonfire.com/org/osteogenesis-imperfecta-foundation-237076021/.

05/20/2026

Medical Consultation Day during OIF National Conference offers families and adults with OI the opportunity to have a face-to-face meeting with a physician or physical therapist who has extensive experience with OI.

With medical consultants from a variety of specialized fields, it is the chance to get questions answered, to have a test or diagnostic letter explained, or to get a second opinion about a treatment. Appointments are FREE of charge and 20 minutes each (conversations only).

Adults and parents must be registered for the National Conference by July 1st, 2026 to receive a priority appointment. To request an appointment, make sure fill out the form found at www.oif.org/conference2026.

Thank you to our Medical Consultations Sponsor, Children's Brittle Bone Foundation.

05/19/2026

Menopause & OI Survey – We Want to Hear From You!

This project is part of the OIF Adult Health Initiative and is being conducted through The Global Adult OI Initiative, an international collaboration of OI clinicians, researchers, and patient advocacy partners, including contributors from Osteogenesis Imperfecta Federation Europe (OIFE) and members of the OIF Medical Advisory Council. The survey was developed to better understand how menopause may impact women with OI—including symptoms, bone health, daily life, and access to care. Your input will help guide future research, resources, and care recommendations.

This survey is in English and open to women age 35+ with OI living anywhere in the world. Take the survey at https://www.surveymonkey.com/r/OIMenopause