New OIF Resource: Cómo abordar un nuevo diagnóstico

Cómo abordar un nuevo diagnóstico
Conjunto de herramientas para familias y profesionales de la medicina

La OI Foundation espera que este recurso le sea útil a usted y a su familia. Recuerde que estamos a disposición para ayudar a la comunidad de familias con OI. Si tiene alguna pregunta o comentario sobre este documento, puede comunicarse con la OI Foundation. Escríbanos a bonelink@oif.org.

OI Research Announcement: Use of clear aligners…

The OI Foundation would like to bring your attention to a research study being conducted by the Brittle Bone Disorders Consortium:
Please call/email to see if you are eligible to participate or have any questions.

Bethesda, MD area:  National Institutes of Health
Danielle Elangue danielle.elangue@nih.gov 301-771-1378

Los Angeles, CA area: UCLA
Hannah Ebbers HEbbers@mednet.ucla.edu 310.794.6420

For more information about current studies through the Brittle Bones Disorders Consortium (BBDC), visit the BBDC webpage.


 

Michael Geisman Fellowship Grant – Applications Now Available

Michael Geisman Fellowship Grant

The Michael Geisman Fellowship Grant program awards funding to post-doctoral trainees who are currently working on projects with clear relevance to osteogenesis imperfecta (OI), or who have projects that will enable them to develop expertise in OI research.

Applicant Requirements:

  • Applicant must hold an MD, DDS, DO, or PhD, and be appointed at the level of a post-doctoral trainee, or equivalent, within an academic institution.
  • Applicant should have completed their Ph.D. or clinical training within the past five (5) years.

Fellowship Guidelines:

  • Michael Geisman Fellowship awards provide up to $50,000 per year. It is the intention of the OI Foundation that grant monies be used to fund actual costs related to the research being performed including Fellow salary, fringe benefits, and supplies.
  • Fellowship awards are for one year; a second year of funding may be approved based upon satisfactory performance during the first year of funding.
  • Research must be done under the supervision of mentor with training and experience in osteogenesis imperfecta research or research in a related field.

How to Apply:

  1. Complete application (pg. 2-8)
  2. Mentor of applicant must submit a copy of his/her NIH biosketch and a letter of recommendation on behalf of the trainee, which also confirms that the mentor will supervise the trainee’s research.
  3. Applications require two additional letters of recommendation from scientists or clinicians who can comment upon the applicant’s training, ability, and potential to develop expertise in OI research.
  4. Submit application, reference letters, and mentor biosketch as PDF documents to sconnors@oif.org NO LATER THAN November 30, 2022.

If you have any questions, please contact Stacie Connors at sconnors@oif.org.

 

Click here for the 2022 Michael Geisman Fellowship application.

OI Research Update: Longitudinal Study

BBDC Research Update: Longitudinal Study

On September 22, 2022, the OI Foundation was joined by Dr. Reid Sutton (Geneticist at Baylor College of Medicine, Administrative Director and Principal Investigator of the Brittle Bone Disorders Consortium, and member of the OIF Medical Advisory Council and Board of Directors) to discuss the Longitudinal Study of Osteogenesis Imperfecta. This study, also known as the Natural History Study, is the largest research project ever conducted on people with OI. Dr. Sutton discussed the design of the study, its goals, and what researchers have learned so far. Watch this session recording below.


Participate in the Longitudinal Study of OI!
The purpose of this natural history study is to perform a long-term follow-up of a large group of people with osteogenesis imperfecta (OI). Information collected will include medical history, number of broken bones, surgeries done, medications taken, ability to walk, pain, lung function and breathing, hearing, and bone mineral density. The overall goal is to improve the health and quality of life of people with OI. Click here to learn more and determine if you are eligible to participate.

OIF Regional Conference: Kansas City, MO

Save the Date! OIF Regional Conference: Kansas City
Saturday, November 5, 2022
The OIF is excited to announce the next Regional Conference will be held in Kansas City, Missouri, on November 5! This 1-day meeting will be co-chaired by Dr. Eric Rush and Dr. Jean-Marc Retrouvey and will be held at the Embassy Suites by Hilton Kansas City Plaza. Speakers will present on topics related to understanding and treating OI and will address pediatric and adult health concerns. More information and registration will be available at www.oif.org/event/regionalkc.

50th Anniversary Celebration

 

Virtual Conference Recordings Now Available!

To watch session recordings from the 2022 OIF Virtual Conference,
click the session titles below, or visit the OIF’s YouTube Channel.  

2022 OIF Virtual Conference Sessions
Research Update
Transition of Care
Navigating a New Diagnosis
Closing Session 

2022 La Conferencia Virtual (Español)
Actualización de la Investigación
Transición de Cuidar 
Sesión de Cierre

2022 Conférence Virtuelle de la Fondation (Française)
Thank you to the Canadian Osteogenesis Imperfecta Society for sponsoring French interpretation!
Mise à Jour sur l’état de la Recherche
Transition des Soins
Naviguer à Travers un Nouveau Diagnostique
Discours de Clôture

Visit the OIF’s YouTube Channel