Rare Diseases Clinical Research Network Patient Advocate Spotlight
Tracy Hart, chief executive officer of the Osteogenesis Imperfecta Foundation, serves as chair of the Rare Diseases Clinical Research Network (RDCRN)’s Coalition of Patient Advocacy Groups. Here, she talks about her work as a rare disease advocate, the founding of the Brittle Bone Disorders Consortium (BBD), and their work in rare disease patient advocacy and research.
Rare Disease Day, which takes place on the last day of February each year, improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases. The OI Foundation is proud to celebrate Rare Disease Day and hope you will join us in raising awareness on this important day! Click here to learn more about Rare Disease Day.
Did you know that there are more than 25 million Americans who are impacted by rare diseases, like osteogenesis imperfecta? On #RareDiseaseDay, we come together to show our stripes and raise awareness! Join us!
ADD A PROFILE PICTURE FRAME!
More than 400 OI community members have added the OIF’s #RareDiseaseDay frame onto their Facebook profile pictures. Share your Unbreakable Spirit® by adding the frame to your profile picture today!
LIKE, COMMENT, & SHARE! Use social media to raise awareness for Rare Disease Day and to share YOUR story.
Be sure to like, comment, and share the OIF’s Rare Disease Day posts on Facebook, Twitter, and Instagram to help us raise awareness for the rare disease community across the world!
ATTEND #RareDiseaseDay at NIH! On Monday, March 1, OIF CEO Tracy Hart and OIF Medical Advisory Council member Robert A. Sandhaus, M.D., Ph.D. will participate as panelists for the session ‘How Care and Research Have Changed During COVID-19‘ at the National Institutes of Health’s (NIH) #RareDiseaseDay event. Click here to register to attend.
Thank you for celebrating Rare Disease Day with the OI Foundation
Impact Grant Applications are due on MONDAY (3/1/21)!
Impact grants may help cover the cost of items such as a wheelchair, physical therapy, hearing aids, or technology. Apply for an impact grant today at www.impact-grants.com.
IMPACT GRANTS 101:
OIF Health Educator Jessica guides applicants through the Jeanie Coleman Impact Grant application process step by step in the Impact Grants 101 video. Check out the video at https://youtu.be/ebpy9cFsqWA
The OI Foundation is hosting the first Virtual Northeast Regional Conference on Saturday, February 27 from 9:00am to 12:00pm Eastern Time.
This virtual meeting, chaired by OIF Medical Advisory Council Member Dr. Cathleen Raggio (Co-Director of the Kathryn O. and Alan C. Greenberg Center for Skeletal Dysplasias at Hospital for Special Surgery and Pediatric Orthopedic Surgeon at the Hospital for Special Surgery in New York City), will feature a series of presentations by experts from the Hospital for Special Surgery (HSS) and other clinics in the Northeast United States. Like past OIF Regional Conferences, this event will provide a brief overview of multiple topics and will feature speakers with extensive experience in treating OI.
Presentation topics will include orthopedic treatments, cardiopulmonary health, hearing, nutrition, physical therapy, and mental health. After each presentation, the speaker and a panel of Northeast-based medical providers will answer audience questions. The full agenda can be found here.
The OIF Virtual Regional Conferences are for both OI community members and medical professionals who want to learn more about understanding OI from infancy through adulthood. The event will feature speakers and panelists from New York and New England.
OIF Regional Conferences are great opportunities for those who have never attended an OIF event to learn more about osteogenesis imperfecta and connect with local providers.
The following is a statement from the OIF’s Medical Advisory Council regarding COVID-19 vaccines. As with any health decision, it is important to discuss with your physician before receiving this or any vaccine, especially if you have a history of allergic reactions after receiving vaccinations.
At the time of this statement, two vaccines (Pfizer and Moderna) have received emergency use authorization in the United States. In the general population, both vaccines seem to have similar safety profiles. Thus, it would be reasonable to think that the two vaccines are likely to have a similar safety profile in individuals with osteogenesis imperfecta. The Pfizer vaccine is approved for use in individuals ages 16 years and older; the Moderna vaccine is approved for individuals 18 years and older.
While some individuals may develop side effects after receiving the vaccine, the OIF’s Medical Advisory Council strongly recommends that individuals with OI who do not have any contraindications to receiving the vaccines, get the vaccination. A contraindication would be any symptom or condition you have that would make these vaccines inadvisable. This is especially relevant in individuals who are at risk for developing significant pulmonary complications. Both the Pfizer and Moderna vaccines are two dose vaccinations and it is important that you receive both doses of the vaccine to maximize the protection the vaccination offers you. Vaccination appears to protect about 95% of people from becoming infected with COVID-19. In individuals who got infected with COVID-19 despite receiving the vaccine, vaccination appears to reduce the severity of disease.
Currently, it is not known whether the vaccines can prevent transmission of the virus from person-to-person; thus, the OIF’s Medical Advisory Council urges people to follow all public health guidelines related to COVID-19 prevention, including wearing of face coverings, social distancing, and frequent washing of hands.
The OIF and the Medical Advisory Council strongly encourage you to talk with your physician before you receive this vaccine, especially if you have a history of allergic reactions after receiving other vaccinations or have a known allergy to any component that is present in the Pfizer and Moderna vaccines. We will update information as it becomes available, and as new vaccines from other companies are approved for use in the United States.
The OI Foundation hosted a second COVID-19 Vaccine Q&A on Thursday, February 11, 2021 at 6:00pm ET. Drs. Bottazzi, Lee, and Sandhaus shared updates on the COVID-19 vaccines and answered questions from OI community members. Discussion topics included anticipated new vaccines, social-distancing in 2021, and more.
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
On March 1, OIF CEO Tracy Hart and OIF Medical Advisory Council member Robert A. (Sandy) Sandhaus, M.D., Ph.D. will participate as panelists during the session titled ‘How Care and Research Have Changed During COVID-19‘ at the National Institutes of Health (NIH)#RareDiseaseDay event.
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
