Osteogenesis Imperfecta Foundation

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In this issue...

OIF National Conference - Registration is Now Open!
'Tis the Season of Giving
From the OIF Information Center
OIF Good Stuff Sweepstakes - LAST CALL for Early Bird Entries

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 OIF National Conference 2018 Registration is NOW OPEN! 

Click here to Register Today!

'Tis the Season of Giving!


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Looking for a way to support the OI Foundation this holiday season? Celebrate #GivingTuesday, use #AmazonSmile while shopping for gifts, Make a Gift in honor or memory of a loved one, or purchase some Unbreakable Spirit® gear from the OIF Online Store!

From the OIF Information Center


New! Recommendation from OI Experts- Treating the Adult with OI

new guidelinesThe OI Foundation would like to bring your attention to a new publication- “A Recommendation from OI Experts- Treating the Adult with OI”- available under the Adult Care section of the OIF Information Center for Medical Professionals website. Click here to view the publication.

A panel of experienced physicians, led by Dr. Jay Shapiro and Dr. Eric Orwoll, developed this recommendation to assist physicians in formulating pharmacological treatment plans for adults living with OI. This document was reviewed by the OI Foundation’s Medical Advisory Council and is available as a resource to the OI community. The OI Foundation always recommends consulting with your local medical team and nearest OI Clinic about your personal treatment plan. 

For more information about treating adults with OI, visit www.oif.org/OIF_mc_adult_care
For more information specifically for adults affected by OI, visit www.oif.org/OIF_Adults.

If you have any questions or are looking for an OI clinic or physician referral, please contact the OIF Information Center at Bonelink@oif.org or (844)889-7579

Brittle Bone Disorders Consortium (BBDC) Pregnancy Study

The Brittle Bone Disorders Consortium (BBDC) is conducting a study on pregnancy in osteogenesis imperfecta and recruiting women living with OI who have delivered a child. The purpose of this self-report survey is to learn about pregnancy outcomes- maternal and fetal- in women living with OI. Click here for study details.

If you have started this survey through the contact registry and did not complete it, please log back in to finish and submit your responses. It is not too late to ensure that your experience is counted in the results! Please contact Amoy Fraser, Project Manager at (813) 396-9462 or Amoy.Fraser@epi.USF.edu if you have any questions.


Uniting Unbreakable Spirits OIF Regional Conference in Portland, Oregon

reg conf portlandThe OI Foundation brought together over 70 attendees for the Uniting Unbreakable Spirits® Regional Conference in Portland, Oregon on Saturday, November 11th.  The meeting, co-chaired by Dr. Eric Orwoll and Dr. Lindsey Nicol, was hosted on the campus of Oregon Health & Science University. The first hour of this meeting was broadcast on Facebook Live. The live video featured welcome remarks from OIF Board Member Ted Trahan and Dr. Orwoll, as well as a session on genetics and inheritance patterns of OI lead by Dr. Byers. We hope to offer live virtual educational sessions as a feature of future programs and events.

bbdc AlonThroughout the course of the day, attendees visited with two exhibitors. Samantha Alon, BBDC Study Coordinator at UCLA, registered meeting attendees in the BBDC Contact Registry and answered questions about research opportunities. Monique McGivney, Director of Corporate Marketing at the Ability Center, was also stationed at a booth to share local adaptive equipment and transportation resources.

Attendees participated in six interactive lectures on genetics, the latest in OI research, orthopedic issues in OI, pharmacologic treatments for OI, physical and occupational therapy strategies, and a report from the Adult Natural History Study (More Than Bones). The day concluded with a social mixer to celebrate new friendships and connections.

The OI Foundation would like to thank all of the meeting speakers, volunteers, and in-person and online attendees for your participation in this meeting. We owe a very special thank you to Drs. Orwoll, Nicol, Byers, Tosi, d’Amato, Stolz, Trenaman; Carolyn Tipton, Melanie Abrahamson, Catherine Pederson, and the entire team at OHSU for their hospitality and organizing efforts! 


podcast seriesListen, Learn, Share!

Leaders in the OI field discuss Multidisciplinary Care, Pregnancy in Women with OI, Pulmonary Issues, Transitioning from Pediatric to Adult Care, Dental Issues, Spinal Issues, and more on the OIF Podcast Series. Listen, learn, share! www.oif.org/OIFpodcast


Fine Wines Strong Bones

The OIF hosted Fine Wines Strong Bones events in some incredible cities during 2017: Naples, FL; Washington, DC; Tampa, FL; New York, NY; Boston, MA; Montreal, Quebec; Chicago, IL; and Houston, TX! Click here to see photos from the 2017 events!

We want to see you at a Fine Wines Strong Bones event! Check out www.oif.org/FineWinesStrongBones for details on upcoming events.


OIF Good Stuff Sweepstakes - Last Call for Early Bird Entries!

Sweepstakes 2017 prizes

By entering the Good Stuff Sweepstakes, you are helping the OI Foundation produce new information resources, fund research, provide answers to more than 7,000 requests for information per year, and facilitate support groups around the country.

Enter The OI Foundation’s Good Stuff Sweepstakes before December 1st to be eligible to win the Early Bird Prize! Visit www.oif.org/sweepstakes to enter or for more information on the Good Stuff Sweepstakes including rules & regulations, deadlines and other prizes.

Osteogenesis Imperfecta Foundation

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804 W. Diamond Ave, Suite 210  |  Gaithersburg, MD 20878
Phone: (301) 947-0083  or  (844)-889-7579  |  Fax: (301) 947-0456

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