The COVID-19 toolkit provides information and resources related to the COVID-19 pandemic for OI community members. If you have questions about COVID-19 and OI, please contact the OIF at email@example.com.
If you are hoping to receive a COVID-19 vaccine, the OI Foundation has assembled the following resources and suggestions to help you advocate for priority vaccination status. The OI Foundation believes that people with OI should be included in the vaccine prioritization group that includes those with chronic lung disease such as COPD.
Since vaccine prioritization decisions are being handled differently by each state and are subject to change, community members are encouraged to research and advocate within their respective states.
Resource: Sample Vaccine Letter
OIF Medical Advisory Council member Dr. Robert Sandhaus MD, PhD has drafted a sample letterto be completed by your doctor to request early administration of a COVID-19 vaccine. While each state has a different process, we recommend addressing the letter to your state’s health department or a specific official or group within it that handles vaccination prioritization decisions. Links to all state health departments can be found here.
Resource: Research on Pulmonary Health and OI
The connection between chronic lung disease and osteogenesis imperfecta has been shown in multiple studies. You can share the following articles with your doctor and relevant parties.
Reviewing your State’s Health Department Guidance:
Review your state’s health department website to find the most relevant group, committee, or individual in charge of vaccine prioritization. Depending on what contact information you find, you may email this letter or physically mail it.
Determine what timeframe people with relevant medical conditions are intended to get the vaccine in your state. While the CDC has recommended that people with certain medical conditions should be considered for priority vaccination in “Phase 1C”, many states have their own timelines, phases, and terminology for when people can get vaccinated.
Remember that all vaccine information is subject to change. Your state may change their rules, and we encourage you to frequently check their website for updates.
Completing the sample letter with your doctor:
Talk with your doctor and ask if osteogenesis imperfecta can qualify you to receive priority vaccination in your state. If they are unsure, assume that your state has not yet released a list of conditions for priority vaccination or that it has not included OI in their guidelines yet. In either scenario, the sample letter may be a useful tool to help advocate for you and others with OI.
When applicable, include any diagnosed pulmonary health issues, regardless of their connection to OI, in your version of the vaccine letter referenced above. You can also mention whether you have other medical conditions that the CDC has identified as high risk beyond chronic lung disease connected to OI. Remember that this sample letter is just a template! Adding relevant information with your physician can help your letter become more persuasive.
Social Distancing and Vaccines
Please remember that even after you receive a COVID-19 vaccine, you will still need to social distance for some time. None of the vaccines are 100% effective and you still may infect others even though you experience lesser symptoms.
The OI Foundation will hosted an update to our COVID-19 Vaccine Q&A on Thursday, February 11 at 6pm ET to update the OI community on new COVID-19 developments.
Meet the Speakers
Maria Elena Bottazzi, PhD – Associate Dean of the National School of Tropical Medicine, Professor of Pediatrics, and Co-Director of Texas Children’s Center for Vaccine Development at Baylor College of Medicine. She is an internationally recognized vaccinologist, has published over 150 scientific papers, and co-chairs the New Vaccines and Therapeutics Taskforce of the Lancet Commission on COVID-19.
Brendan Lee, MD, PhD – Robert and Janice McNair Endowed Chair in Molecular and Human Genetics, Professor and Chairman, Department of Molecular and Human Genetics, Baylor College of Medicine
Robert A. Sandhaus, MD, PhD, FCCP – Pulmonologist, National Jewish Health
As the COVID-19 vaccine is slowly becoming available, your local health department determines how COVID-19 vaccines are distributed in your state. Each state is handling the distribution and determining eligibility differently. Listed below are the links to each state’s health department website with up to date information on where and how to receive the vaccine. Please work with your physician to decide if you will receive the vaccine.
In December, the OI Foundation spoke with a COVID-19 vaccine researcher and other experts to answer your questions about the COVID-19 vaccine. If you were unable to attend this session, please click here to watch the recorded session
To learn more about the availability of the vaccine and where to receive it in your area, please click the link for your state listed below.
The OI Foundation is making every effort to provide the most up-to-date information about the COVID-19 pandemic for the OI community. To view resources and updates from the OIF, please visit https://oif.org/category/covid19/.
Thank you to the 199 community members who filled out OIF’s COVID-19 survey to help us better understand how the COVID-19 pandemic is affecting families and individuals living with OI. Your responses will help shape future OIF programs.
A large portion of the OI community has become less active. Health advocates believe that “movement is life.” Therefore, the OIF will provide new opportunities to encourage OI-appropriate exercises and activities.
The OIF recommends that community members take the flu and Pneumovax vaccines in order to maintain the best possible pulmonary health. Of note, many pharmacies are offering drive-thru vaccine stations. To view locations where you can receive a flu shot in your area, use the Vaccine Finder at www.vaccinefinder.org.
Anxiety and/or depression have been a challenge for many individuals during the COVID-19 pandemic. The OI Foundation has held two community calls on this topic, focusing on resiliency and self-care (available at www.oif.org/podcast) as well as sharing numerous resources for addressing the pandemic, and will continue to offer similar events in the future.
To view the full COVID-19 Survey results, click here.
The impact of the pandemic is changing daily. We will be sending a second survey out in early 2021, so, if you missed the first survey, please be sure to enroll for the next one! To complete the survey, you must be a member of the OI Registry.
Employment Accommodations and COVID-19: Understanding your Legal Rights During the Pandemic
THURSDAY, OCTOBER 15, 2020 // 2:00 – 3:00pm EST
On Thursday, October 15, Gary Phelan and Michelle Duprey joined the OIF to discuss Employment Accommodations and COVID-19. Both of the speakers have extensive experience practicing law focusing on employment and disability discrimination. In this session, they discussed the ADA and shared best practices for getting accommodations at work related to COVID-19.
Final Reminder: Survey Opportunities for the OI Community
The Osteogenesis Imperfecta Foundation would like to bring your attention to survey opportunities for OI community members.
Orthopedic Patient Survey
A group of orthopedic surgeons with extensive experience in treating OI have come together to learn more about the patient experience. Please take a moment to complete this survey. Your participation will help these OI experts better understand the needs of people living with osteogenesis imperfecta.
Please take 5-10 minutes to complete the survey by Sunday, October 18, 2020.
Rare Diseases Clinical Research Network COVID-19 Survey
How are you being impacted by the novel coronavirus pandemic?
Please complete a 20-minute online research survey from home to share your experiences. This study is being conducted by the NIH’s Rare Diseases Clinical Research Network. Is access to care changing? Can you get needed medical and nutritional supplies? Are stress and anxiety impacting you and your family? Your responses may help researchers understand the impacts of COVID-19 on the rare disease community.
Disclaimer: The OI Foundation is not involved in the design or management of this research, and as such, is neither endorsing nor supporting these surveys. 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 firstname.lastname@example.org.
*NEW OIF RESOURCE* What You Need to Know About Clinical Trials
While the OI community and the entire world eagerly await a coronavirus vaccine, we want to briefly explain the importance of clinical trials and how people with OI can get involved in helping expand medical knowledge.
CLICK HERE to view the OI Foundation’s What you Need to Know About Clinical Trials fact sheet
On Thursday, September 3, 2020, Dr. Kara Ayers (Associate Director of the University of Cincinnati Center for Excellence in Developmental Disabilities) and Dr. Michelle Fynan (Online Instructor at LA Film School, Online Coach and Therapist) joined fellow OI community members on a video call to discuss mental health considerations during the COVID-19 pandemic.
OI Foundation Project, Improving Patient-Centered Outcomes: Expanding Engagement of the Osteogenesis Imperfecta Community, Approved for Supplemental Funding Award
The Osteogenesis Imperfecta Foundation is excited to announce that supplemental funding has been approved for the Improving Patient-Centered Outcomes: Expanding Engagement of the Osteogenesis Imperfecta Community project to include investigating the impact of the COVID-19 pandemic on the osteogenesis imperfecta community. This important project advances the collaboration of the OI Foundation (Tracy Hart, CEO, Lead) and Co-Leads Dr. Laura Tosi, Director, Bone Health Program, Children’s National Hospital and Dr. Bryce Reeve, Director, Center for Health Measurement, Duke University. The goals of the supplemental funding award are to assist the rare bone disease community in developing COVID-19 content and outreach, expand the OI PCOR toolkit to include COVID-19-specific resources, expand OI clinic outreach to disseminate content on COVID-19, and create and disseminate OI-relevant COVID-19 content.
On June 25th, Dr. Laura Tosi and Dr. Reid Sutton discussed how to prepare and what to expect during a Telehealth Visit. After brief presentations, both doctors participated in a Q&A with the OIF and the audience.