Author: OI Foundation

OIF Scientific Meeting Recap

Posted on by OI Foundation
Each year during the OI Foundation’s annual Scientific Meeting, leading scientists and medical professionals gather to share their research on osteogenesis imperfecta (OI). Dr. Frank Rauch (OIF Medical Advisory Council Member) discussed the 2023 meeting and some of the major takeaways from this year’s event in a Research Update video.

OI Awareness Week Social Media Toolkit

Posted on by OI Foundation

National Osteogenesis Imperfecta Awareness Week is May 6 – 13, 2023!

One of the most effective (and free!) ways to raise awareness during National OI Awareness Week (May 6-13, 2023) is through social media. Please join us in bringing attention to this important week by sharing OIF posts, facts about OI, your OI story, and information about OIF programs and events on your social media pages including Facebook, Instagram, Twitter, LinkedIn, and YouTube.

We have provided sample posts for your use below. Stay connected with the OI Foundation and OI community by using the hashtags #OIawarenessweek and #UnbreakableSpirit in your posts.

Sample Posts:

Guidelines for Use: OI Awareness Week logos and graphics may be used for educational and informational purposes in relation to OI Awareness Week. These graphics may not be used to endorse products/services or to solicit funds.

Click here to download these graphics from Dropbox.

 

National OI Awareness Week

These graphics are perfect to remind your friends and family that a very special week is coming up!

 

Sample posts:

  • National OI Awareness Week is May 6-13! Please join me in raising awareness and support for a community that is so special to me! #OIawarenessweek #UnbreakableSpirit
  • I can’t wait for #OIawarenessweek! I will be raising OI awareness by…. I hope you will join me by….
  • National OI Awareness Week begins tomorrow! I will be raising OI awareness and hope you will do the same! To raise OI awareness this week, I will… [YOUR RESPONSE HERE]. This is important to me because … For more information on how you can raise awareness and support the OIF this week, visit www.oif.org/awarenessweek. #OIawarenessweek #UnbreakableSpirit

Facts about OI

OI is a rare disease that your social media friends may not know much about, or even heard of! OI Awareness Week is the perfect time to share facts about OI!

   

Sample posts:

  • Do you know what osteogenesis imperfecta (OI) is? OI is a rare and complex genetic disorder of the collagen that is often characterized by bones that break easily. While the major feature of OI is bones that break easily, many other body systems may be affected and individuals with OI may experience dental issues, hearing loss, muscle weakness, cardiac and respiratory issues. OI is highly variable, ranging from few symptoms and fractures to a form that is lethal at birth. Learn more about OI at www.oif.org. #OIawarenessweek #UnbreakableSpirit
  • What causes OI? OI is caused by a mutation (change) in collagen, the major protein present in bone. These mutations affect bone composition, formation, and strength, as well as the structure of other tissues. Learn more at www.oif.org #OIawarenessweek #UnbreakableSpirit

 

Learn More!

Share resources on your social media pages for your friends, family, and followers to learn more about OI.

 

Sample posts:

  • The OI Foundation’s goal is to provide information for OI community members, medical professionals, and caregivers. The OIF’s online Information Center includes medically verified information about OI, OI publications, video resources, and fact sheets. Learn more about OI and the programs of the OI Foundation at www.oif.org. #OIawarenessweek #SHAREforAWARENESS
  • Raising awareness of OI is so important, especially during National OI Awareness Week! One of the best ways to understand is to ask questions! Do you have questions about OI? I’ll do my best to answer them and share my experiences! #OIawarenessweek #UnbreakableSpirit

Share Your Story

During OI Awareness Week, your friends and family want to hear from YOU! One of the best ways to raise OI awareness among your friends, family, and community is to share your OI story!

 

Share your relationship and experience with OI, what having OI means to you, or a personal story.

How to Support the OI Community

Your friends, family, and fellow OI community members may want to support National OI Awareness Week, but are not sure where to begin! Share this list of 5 simple ways to participate in this special week!

Sample post:

  • There are so many ways to get involved in National OI Awareness Week! It would mean the world to me if my family, friends, and followers would join me in raising awareness for OI this week. For more information about how you can get involved, please visit www.oif.org/awarenessweek. #OIawarenessweek

 

Click here to download these graphics from Dropbox.

Connect with the OI Foundation on Social Media! Like, follow, share!

 

Currently Recruiting!

Posted on by OI Foundation

7707: Use of clear aligners for the treatment of dental malocclusion in individuals with Osteogenesis Imperfecta Types III and IV
Misalignment of teeth may interfere with oral hygiene, gum health, jaw function, opening of the jaw, chewing, breathing, and speech. It can also affect the shape of your face, mouth and overall quality of life. There is very little information on the appropriate treatment for teeth misalignment in OI.

The purpose of this study is to determine if it is safe to use Invisalign clear aligners in correcting the misalignment of teeth in people with OI. Clear aligners are transparent plastic trays that are designed to fit over your teeth. With each new tray, teeth are moved a little at a time until they reach the desired position. We plan to have approximately 57 people take part in this study. If you take part in this study, you will be asked to come to a participating site for up to a total of 15 study visits over a course of 2 years and 4 months (or 28 months).

You may be eligible to participate if you:

  • are between ages 12 – 40
  • have OI type III or IV
  • have had no prior orthodontic treatment

How to participate:
In order to participate, you must contact the study coordinator of any of the participating institutions by phone or by e-mail. Please use the information below to inquire about participation:

National Institutes of Dental Craniofacial Research (Bethesda, Maryland)
Contact: Danielle Elangue MHA, MBA, RN,  Research Nurse Specialist ( C )
301-451-9733   |   danielle.elangue@nih.gov

University of California at Los Angeles (Los Angeles, California)
Contact: Sarah Gaunt, Clinical Research Coordinator
310 -206 -7176   |    sgaunt@mednet.ucla.edu

Disclaimer: The OI Foundation is not involved in the design or management of this research, and as such, is neither endorsing nor supporting this study. The mission of the OIF is to keep the OI community informed of all relevant studies. This information is made available as a service to the OI community. We are available to answer questions on this or any other research announcement. Please contact the OI Foundation at (301) 947-0083 or bonelink@oif.org if you have any questions.

National OI Awareness Week is May 6-13!

Posted on by OI Foundation

National OI Awareness Week is May 6 – 13, 2023!

National OI Awareness Week is a week dedicated to raising awareness for OI and sharing your Unbreakable Spirit®. OI Awareness Week is scheduled around Wishbone Day (May 6), the international OI Awareness Day.  Each year during National OI Awareness Week, OI community members request state proclamations, hang flyers, hold events, and share social media posts to raise OI awareness.

How will YOU raise OI awareness this week?

The IMPACT Survey

Posted on by OI Foundation

Living With Osteogenesis IMPerfecta: UnderstAnding Experiences Based On Community InsighT and Evidence Survey, the IMPACT Survey

What is the IMPACT survey?

In 2021, the Osteogenesis Imperfecta Foundation (OIF), the Osteogenesis Imperfecta Federation Europe (OIFE), and Mereo BioPharma collaborated closely to launch the IMPACT Survey. The goal of this project was to capture and quantify the real impact OI has on the lives of people with OI, their families, and caregivers. We were thrilled that more than 2,200 OI community members from 66 countries participated in this survey!

The survey was based on evidence gaps around:

  • Clinical impact of OI on affected individuals
  • Humanistic impact on individuals, their families and caregivers
  • Economic impact on individuals and wider society

The IMPACT survey is now closed.  Thank you to all participants who made this possible.

 

What were the target groups?

The survey was developed for the following primary target groups:

  • Adults with OI (over 17 years old)
  • Parents (without OI) of children with OI
  • Parents (with OI) of children with OI
  • Adolescents with OI (12 – 17 years old)

In addition to the target groups above, there were also a substantial number of responses from

  • Parents of adults with OI
  • Close relatives of people with OI

There were different questions based on which target group you belong to. Adults with OI who had children with OI, could answer both on behalf of themselves and their children.

Geographic distribution of respondents

 The collaborative survey development allowed members across OI communities and geographies to participate.

 

 

 

 

What will the data be used for and how will it be stored?

The IMPACT Survey provides a large global dataset describing the experiences of the OI community.  The results of this survey are being used to improve healthcare services and potential future treatments for OI.

The data was gathered on a confidential and anonymous basis, with Non-Personally Identifiable Information (Non-PII) . It will be securely stored by Wickenstones according to Data Protection Regulations. The data is now being analyzed according to the plan developed by the Steering Committee, to prepare four proposed central publications on the impact of OI in peer-reviewed, scientific journals.

 What data has been published? What are the findings?

So far, the first article “The patient clinical journey and socioeconomic impact of osteogenesis imperfecta: a systematic scoping review” was published in Orphanet Journal of Rare Diseases in February 2023. The purpose of this review was to capture and quantify the published evidence relating specifically to the clinical, humanistic, and economic impact of OI on individuals, their families, and society.

The review suggests that there is limited data regarding health concerns beyond bone health and how these concerns may impact health-related quality of life, in particular that of adult men and other family members.

The four remaining articles will be published in 2023 and 2024.

The graphic below describes the most common health conditions in adults with OI (of the past 12-months prior to answering).  Pain, fatigue and soft tissue are the most common symptoms, while fractures are in 13th place for the adult population.

We have been given permission to share this graphic.

 

 

 

**Important Medicaid Information!**

Posted on by OI Foundation

During the pandemic, state Medicaid programs were required to keep beneficiaries enrolled, even if they did not meet the eligibility criteria. This requirement will expire on May 11, 2023. With the Public Health Emergency ending, states can resume Medicaid disenrollment starting April 1 – leaving individuals without health coverage. The OIF urges you to contact your state Medicaid agency providers to retain coverage or if no longer eligible switch to other sources of coverage.

The Medicaid and CHIP Communications Toolkit suggests taking the following steps to stay enrolled:

  1. Update your contact information – Make sure your state’s Medicaid or CHIP program has your current mailing address, phone number, email, or other contact information. This way, they’ll be able to contact you about your Medicaid or CHIP coverage.
  2. Check your mail – Your state’s Medicaid or CHIP program will mail you a letter about your Medicaid or CHIP coverage. This letter will also let you know if you need to complete a renewal form to see if you still qualify for Medicaid or CHIP.
  3. Complete your renewal form (if you get one) – Fill out the form and return it to your state’s Medicaid or CHIP program right away to help avoid a gap in your Medicaid or CHIP coverage.

Other important messages:

  • If you no longer qualify for Medicaid or CHIP, you may be able to get health coverage through the Health Insurance Marketplace®. Marketplace plans are:
      » Affordable. 4 out of 5 enrollees can find plans that cost less than $10 a month.
    » Comprehensive. All plans cover things like prescription drugs, doctor visits, urgent care, hospital visits, and more.
  • Losing Medicaid or CHIP coverage is a Qualifying Life Event (QLE), which allows you to enroll in a Marketplace plan outside of the Open Enrollment Period.
  • Visit HealthCare.gov or call the Marketplace Call Center at 1-800-318-2596 (TTY: 1-855-889-4325) to get details about Marketplace coverage.
  • If your child no longer qualifies for Medicaid, you may be able to get them health coverage through your state’s Children Health Insurance Program (CHIP).
  • For more information about Medicaid renewal or CHIP coverage, contact your state Medicaid office or visit Medicaid.gov.

For more information, please consult: Medicaid.gov/Renewals

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For those who will not be covered through Medicaid, please find information on Federally-Facilitated Marketplace (FFM) coverage below:

Federally-Facilitated Marketplace (FFM): Overview of Key FFM Processes and Updates on Plans for Medicaid Unwinding

Medicaid Unwinding Special Enrollment Period (SEP)

  • To ensure individuals have sufficient time to enroll in Marketplace coverage during the unwinding period, consumers who lose Medicaid/CHIP coverage between March 31, 2023 and July 31, 2024 will be eligible for a 60-day SEP beginning the day they submit or update a Marketplace application.
  • Consumers can access this Unwinding SEP by submitting or updating an application through HealthCare.gov, a certified partner that supports SEPs, or the Marketplace Call Center.
  • CMS has published Marketplace guidance on the unwinding SEP: https://www.cms.gov/technical-assistance-resources/temp-sep-unwinding-faq.pdf
  • CMS recommends that Medicaid/CHIP enrollees submit or update an application on HealthCare.gov as soon as they receive their Medicaid/CHIP termination letter from their state.

More information can be found at: https://www.healthcare.gov/medicaid-chip/transfer-to-marketplace/