OI Awareness Week Social Media Toolkit

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!

 

National OI Awareness Week is May 6-13!

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

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!**

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 informationMake 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/


 

Using the ECHO Model® to Expand Professional Learning Opportunities for Osteogenesis Imperfecta

OIF Director of Education, Michael Stewart is presenting a poster at #RareDiseaseDay at NIH today.

Using the ECHO Model® to Expand Professional Learning Opportunities for Osteogenesis Imperfecta

From October 2020 to September 2021, the Osteogenesis Imperfecta (OI) Foundation ran a monthly OI TeleECHO Clinic Series program. In every session, expert medical faculty and guest speakers deliver a didactic presentation on diagnosing or treating OI, group discussions, and then followed by participant-led case presentations. These sessions reached hundreds of medical professionals and expanded access to expert medical knowledge on this rare bone disease.
Click here to view the poster.


Complete the new OI and Pain Survey!

The OI Foundation and OI Federation of Europe (OIFE) have partnered on a new project investigating the experience of pain for people with OI. The following survey investigates the experience of pain for people with OI. This survey is for anyone 18 years old or older and was written with input from OI experts from North America and Europe.

Through this survey, the international Pain and OI Project hopes to learn more about the different types of pain people experience, severity of pain and frequency, and how it impacts people’s lives. Findings from this survey will be published online and presented at OIFE’s Topical Meeting, “Balancing Life with OI” in Stockholm, Sweden from June 9-10, 2023.

Click here to take the survey