Month: February 2021

Patient Advocate Spotlight: Tracy Hart

Posted on by Delores Selivon

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.

Click here to read the article!

Sunday is #RAREDISEASEDAY

Posted on by Delores Selivon

THIS SUNDAY – #RAREDISEASEDAY

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!

  1. 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!
  2. 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!
  3. 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 Grants 101

Posted on by Delores Selivon

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

Virtual Northeast Regional Conference

Posted on by Delores Selivon

Virtual Northeast Regional Conference

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.

 


Who should attend? 

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.

COVID-19 Vaccines Statement from the MAC

Posted on by Delores Selivon

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.