The OI Foundation has published factsheets, toolkits, and video resources on many topics related to understanding and living with OI. Gain strength through knowledge!
Topics
Media
Print Materials
Adult Health Toolkit: Information for Adults Living with OI, Their Families, and Medical Professionals
Click to view our page on “Information for Adult Health” Click to download in English Click to download in Spanish Click to download in...
Navigating a New Diagnosis: A Tool Kit for Parents and Medical Professionals
Click to view our page on “Navigating a New Diagnosis” Click to download in English Click to download in Spanish Click to download in...
A Message from the OI Foundation about Coronavirus Disease 2019
The OI Foundation, with the help of its expert partners, will continue to keep the OI community updated as more information becomes available. In...
A Recommendation from OI Experts: Treating the Adult with Osteogenesis Imperfecta
Selection of pharmacological therapies for fracture prevention in adults with OI On July 27-28, 2017, a meeting was held in Baltimore, Maryland under the...
Adapting Cars, Vans or Trucks for Drivers with OI
Drivers who have OI and their families often need to add special equipment to their cars, vans or trucks to make it possible to...
Adaptive Equipment
Adaptive equipment often makes the difference between a life of independence and a life of limitation. Assessing each person’s needs, desires and limitations, along...
Adults and Fractures
Living with OI Osteogenesis imperfecta (OI) is a genetic disorder characterized by bones that break easily, often from little or no trauma. OI is...
Anesthesia Information for People who have Osteogenesis Imperfecta
Some anesthesia risks are associated with patients with OI that distinguish them from the general population. Anesthesia personnel need to be aware of the...
Basics of OI/Genetics: OIF Virtual Conference
This session is an introduction to osteogenesis imperfecta for individuals and families with a new diagnosis, and for those who want a refresher on...
Bisphosphonate Use in Children Living with OI
Bisphosphonate therapy, such as intravenous pamidronate or zoledronic acid, has become a standard treatment to increase bone density in children with moderate and severe...
Bone Mineral Density: What it Means and How to Measure it
What is Bone Mineral Density? Measuring bone mass and bone density is a common part of managing osteogenesis imperfecta (OI) in children and adults....
Care for the Adult Patient with OI
Osteogenesis imperfecta (OI) is a lifelong systemic connective tissue disorder. Although the hallmark is fragile bones, this connective tissue abnormality is expressed in many...
Checklist of Possible Accommodations to Review When Visiting Colleges
A student who has osteogenesis imperfecta may need a great many accommodations while at college or very few and this may vary from one...
Child Abuse Issues
Osteogenesis imperfecta (OI) is characterized by bones that break easily. A minor accident may result in a fracture; some fractures may occur while a...
Child Abuse or Osteogenesis Imperfecta?
A child is brought into the emergency room with a fractured leg. The parents are unable to explain how the leg fractured. X-rays reveal...
Constipation
Introduction Constipation is a problem for some people with osteogenesis imperfecta. Constipation is defined as a decrease in frequency of stools or bowel movements...
Coronavirus 2019: Información actualizada al 13 de marzo de 2020:
Información actualizada al 13 de marzo de 2020: El Centro de Control y Prevención de Enfermedades de los Estados Unidos (CDC) ha publicado nuevas recomendaciones...
COVID-19 Q&A; Orthopedic Perspectives on OI
COVID-19 Q&A: Orthopedic Perspectives on OI during the COVID-19 Pandemic with OI experts Thursday, March 26, 2020 On Thursday, March 26, 2020 at 5:30...
COVID-19 Q&A: Mental Health and Self-Care
COVID Q&A; Mental Health and Self-Care during the COVID-19 Pandemic Thursday, March 26, 2020 On Thursday, March 26, 2020 at 1:00 p.m. ET, the...
COVID-19 Q&A: Nutrition
Eating Healthy during the COVID-19 Pandemic Thursday, April 9, 2020 – 1:00pm EST Ashley Reese, MMN, RDN, LMNT (Clinical Pediatric Dietitian) and Stefanie Sacks,...
COVID-19 Survey
The OI Foundation has created a third COVID-19 Survey focused on how the Omicron variant and the pandemic are impacting the OI community. All...
COVID-19 Survey 3 Results
Thank you to all of the 577 OI community members who took the time to fill out the OI Foundation’s third COVID-19 survey! Our...
COVID-19 Survey Results
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...
COVID-19 Update: Delta Variant
The OIF’s Medical Advisory Council recommends following the Centers for Disease Control and Prevention (CDC) COVID-19 guidelines. The Centers for Disease Control and Prevention...
COVID-19 Vaccine Booster Shots
Update from the Centers for Disease Control and Prevention: Federal health officials have developed a plan to begin offering COVID-19 vaccine booster shots this...
COVID-19 Vaccine Distribution
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...
COVID-19 Vaccine Information from an OI Expert
Dr. Robert Sandhaus, pulmonologist and member of the OIF’s Medical Advisory Council, answered common questions and concerns regarding people with OI and the COVID-19...
COVID-19 Vaccine Q&A Recording
The video recording of the OIF’s COVID-19 Vaccine Q&A video call is now available. (more…)
COVID-19 Vaccine Resources
The OI Foundation is making every effort to provide the most up to date information about the COVID-19 pandemic for the OI community. Results...
COVID-19 Vaccine Update Session
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...
COVID-19 Vaccine Update Virtual Session
OIF Virtual Session: COVID-19 Vaccine Update On November 17, 2021, Dr. Robert Sandhaus (pulmonologist and OIF Medical Advisory Council member) was joined by Admiral...
COVID-19 Vaccines Statement from the MAC
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...
COVID-19: Updated Recommendations from the CDC
Updated Recommendations from the CDC The OIF’s Medical Advisory Council recommends following the Centers for Disease Control and Prevention (CDC) COVID-19 guidelines. The COVID-19...
Dental Care for People with Osteogenesis Imperfecta
Introduction Osteogenesis imperfecta (OI) is always associated with bone fragility. In addition, OI may affect the growth of the jaws and may or may...
Dental: Oral-Facial Issues
OI affects the growth of both jaws and tooth development. In addition, about 50% of people with OI also have dentinogenesis imperfecta (DI). Regular...
Differential Diagnosis: Brittle Bone Conditions Other than OI
Fragile bones are the hallmark feature of osteogenesis imperfecta (OI). The mutations that cause OI lead to abnormalities within bone that result in increased...
Disability Identity and OI
OIF Board member Dr. Kara Ayers discusses Disability Identity and OI
Discuss COVID-19 with OI experts
During this challenging time, we at the OI Foundation will make every effort to provide you with the most up to date information on...
Education Issues
Parents of children with osteogenesis imperfecta (OI) need to become familiar with the federal and state services that are available to provide a free...
Emergency Department Management of Patients with OI
Osteogenesis imperfecta (OI) is a genetic disorder of connective tissue. The hallmark of OI is bones that fracture easily with little or no apparent...
Employment Accommodations and COVID-19
You are invited to join Gary Phelan, Michelle Duprey, and the OI community to discuss Employment Accommodations and COVID-19.
Exercise and Activity: Key Elements in the Management of OI
Introduction Osteogenesis imperfecta (OI) is a connective tissue disorder characterized by fragile bones, weak muscles and lax (loose) ligaments. Bone problems can include bowing...
Fast Facts on Osteogenesis Imperfecta
Definition Osteogenesis imperfecta (OI) is a genetic disorder characterized by bones that break easily, often from little or no apparent cause. A classification system...
Final Reminder: Survey Opportunities
The Osteogenesis Imperfecta Foundation would like to bring your attention to survey opportunities for OI community members.
Financial Planning for Parents
Introduction Parents of children with OI need to process a great deal of information. Besides keeping up to date on changes in treatment options...
Flu Facts for People who Have OI
What is the flu? Flu (influenza) is a serious illness. It’s caused by a virus that infects the nose, throat and lungs. It can...
Fracture Management
Osteogenesis imperfecta (OI) is a disorder that is characterized by frequent bone fractures. As a result, people with this disorder may spend a considerable...
Genetics
Osteogenesis imperfecta (OI) is the result of a change in genes that are instructions for making type 1 collagen (the major protein in bone...
Guidelines for College Selection Process for Students Who Have OI
Planning for college is an exciting and time consuming process. Here are a few suggestions of topics for students who have OI and their...
Hearing Loss and Osteogenesis Imperfecta
Introduction Significant hearing loss has been reported in approximately 50% of people with osteogenesis imperfecta (OI) beginning any time from childhood into middle age....
Infant Care Suggestions for Parents
Nurses who work in neonatal intensive care units and nursery departments have experience caring for very small and fragile infants. They can help parents...
Inheritance Patterns: How OI Occurs in Families
Background. In general, we have two copies of each gene. One copy we inherited from our father and one we inherited from our mother....
Know Your OI: A Basic Health History
It is important for adults who live with a lifelong medical condition such as OI to have access to their medical history information. Both...
LAST CALL! COVID-19 Survey Closes Wednesday
As a follow-up to the survey in July 2020, the OI Foundation has created a second survey focused on how the COVID-19 pandemic continues...
Learn More about COVID-19 from OI Experts
OI community members were invited to join OI experts, Dr. Robert Sandhaus (pulmonologist at National Jewish Health in Denver, CO) and Dr. Sandesh...
Learning How to Drive with OI
Like driving itself, learning to drive is a dynamic process. For young people who have OI, learning to drive will involve access to an...
Managing Adult Health Issues: Adult Panel: OIF Virtual Conference 2020
Physician panel members who have clinical experience treating adults living with OI will present an overview of general medical issues. The panel addresses quality-of-life...
Managing Pediatric Health Issues: OIF Virtual Conference 2020
Pediatric physician panel members present an overview of general medical issues including: navigating surgery, bone, muscle and joint health, the role of pharmacologic treatments,...
Measuring Efficacy of Physical Rehabilitation in Children and Adults
Dr. Maureen Donohoe
Navegando por un Nuevo Diagnóstico – La Conferencia Virtual de la Fundación OI
La grabación en idioma español se llevó adelante en tiempo real para el uso directo e inmediato de la audiencia. No debe interpretarse como...
Navigating a New Diagnosis: Virtual OIF Conference 2021
Navigating a New OI Diagnosis (Sponsored by Ultragenyx Pharmaceutical) This OIF Virtual Conference session is an introduction to osteogenesis imperfecta for individuals and families...
Naviguer à Travers un Nouveau Diagnostique: Conférence Virtuelle de la Fondation pour l’OI
L’enregistrement en langue française a été produit en temps réel pour une utilisation directe et immédiate des auditeurs. Il ne doit pas être interprété...
New CDC Guidelines for People who are Immunocompromised
New CDC Guidelines for People who are Immunocompromised The OIF’s Medical Advisory Council recommends following the Centers for Disease Control and Prevention (CDC) COVID-19...
Nosology (Classifications) of Osteogenesis Imperfecta
. OI TYPE INHERITANCE PHENOTYPE GENE MUTATION DEFECTS IN COLLAGEN SYNTHESIS, STRUCTURE, OR PROCESSING I AD Mild Null COL1A1 Allele II AD Lethal COL1A1...
Nutrition and OI
To promote bone development and optimal health, children and adults with osteogenesis imperfecta (OI) should eat a balanced diet, which is low in fat,...
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 Community Call: Mental Health during COVID-19
On Thursday, September 3, 2020, Dr. Kara Ayers (Associate Director of the University of Cincinnati Center for Excellence in Developmental Disabilities) and Dr. Michelle...
OI Foundation PCOR Project Approved for Supplemental Funding Award
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...
OI Issues: Maintaining Health During the Adult Years
Introduction Osteogenesis imperfecta (OI) is a genetic disorder characterized by bones that break easily, often from little or no apparent trauma. It is caused...
OI Issues: Type I – Understanding the Mildest Form of Osteogenesis Imperfecta
Introduction Osteogenesis imperfecta (OI) is a genetic disorder characterized by bones that break easily. OI is highly variable. Its signs and symptoms range from...
OI Issues: Understanding Bone Structure
Introduction: Structural Organization of Bone The structure of bone is very similar to reinforced concrete that is used to make a building or a...
OI Testing Laboratories in the United States and Canada
Academic or Hospital-Based Testing Centers New Orleans, LA Tulane University Medical School 1430 Tulane Avenue, SL-99, Room M061 New Orleans, LA 70112 www.tulane.edu/som/regenmed/services/dnadiagnostics.cfm Charlene...
OIF Mask Recommendations
March 14, 2022 While mask guidelines are being eased across the United States, the OI Foundation recommends, with guidance from our medical experts, that...
Osteoporosis: What You Need to Know
What Is Osteogenesis Imperfecta? Osteogenesis imperfecta (OI) is a genetic disorder characterized by bones that break easily, often from little or no apparent trauma....
Pain Management
Pain is the body’s way of responding to damaged tissue. How a person responds to pain is determined by many factors, including emotional outlook....
Panel de Salud Pediatrica – La Conferencia Virtual de la Fundación OI
La grabación en idioma español se llevó adelante en tiempo real para el uso directo e inmediato de la audiencia. No debe interpretarse como...
Pediatric Health Panel: Virtual OIF Conference 2021
(Sponsored by Shriners Hospital for Children, Canada) OI experts in genetics, surgery and mental health present an overview of what you need to know...
Physical and Occupational Therapeutic Strategies for Adults with OI
Dr. Frances Baratta-Ziska
Physical and Occupational Therapeutic Strategies for Children with OI
Dr. Frances Baratta-Ziska
Planning a Family
Yes. Many men and women who have OI are parents. All young people who have OI need to receive information about reproductive health, sexuality...
Planning for Your Child’s Surgery: What Parents Need To Know Before, During and After Their Child is in the Hospital
Introduction Parents are an important part of the healthcare team when a child needs surgery. They are often called on to help their child...
Pneumonia Vaccine Update
The Foundation is continually developing new information resources in response to the needs of families, individuals, and professionals working with those affected by OI....
Pregnancy: Expecting a Child with OI
. Pregnancy: Expecting a Child with OI . . Sometimes, women who do not have osteogenesis imperfecta (OI) become concerned about it during pregnancy....
Pregnancy: Women Who have OI
A woman with osteogenesis imperfecta (OI) who becomes pregnant may experience an uneventful pregnancy or one with difficulties. Similarly, a baby with OI may...
Prenatal Diagnosis and Testing
When Both Parents Have OI If two people with OI have a child, there is a 75 percent chance that the child will inherit...
Preparing for Your Telehealth Appointment
Preparing for Your Telehealth Appointment On June 25th, Dr. Laura Tosi and Dr. Reid Sutton discussed how to prepare and what to expect during...
Preparing to Send A Child with OI to School
Can my child with OI attend regular school? Children with OI, all types, usually have normal to above-average intelligence, and typically participate in a...
Preventing Vertebral Compression Fractures
Introduction For children and adults with OI the spine is particularly vulnerable to injury. Some activities such as contact sports obviously increase the risk...
Pulmonary Issues
Pulmonary Issues Respiratory complications are a leading cause of death for children and adults who have OI, especially those with severe or Type III....
Questions and Answers about Bisphosphonates
In recent years the investigational use of bisphosphonates to treat children and adults with osteogenesis imperfecta has received increasing attention from the medical research...
Resources on COVID-19 Vaccinations
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...
Respiratory Issues in Osteogenesis Imperfecta
Introduction The respiratory system’s job is to bring oxygen into the body and remove carbon dioxide, the waste product of breathing. Because oxygen is...
Rodding Surgery
Introduction Rodding surgery is the placement of a metallic device called a rod or nail into the internal cavity (medullary canal) of a long...
Sexual Health and OI
Sexual health is an important aspect of overall well-being, and it deserves attention and consideration for individuals with osteogenesis imperfecta (OI). While OI can...
Social and Emotional Issues of Living with OI
Introduction Osteogenesis imperfecta (OI) is a genetic disorder characterized by bones that break easily. It has been described as a chronic disorder with crisis...
Surgery Considerations for Adults and Children
Introduction People who have osteogenesis imperfecta (OI) and their families need to plan ahead for hospitalizations. This planning process can include becoming familiar with...
Table Ronde sur la Santé Pédiatrique: Conférence Virtuelle de la Fondation pour l’OI
L’enregistrement en langue française a été produit en temps réel pour une utilisation directe et immédiate des auditeurs. Il ne doit pas être interprété...
Talking With Your Orthopedist
Introduction People with osteogenesis imperfecta (OI) usually require the services of a healthcare team that includes several specialists, along with a primary-care physician. The...
Talking With Your Primary Care Doctor
Introduction People with osteogenesis imperfecta (OI) usually require the services of a healthcare team that includes a primary-care physician (PCP) and several specialists. The...
The Results Are In!
Tremendous thanks to the 649 community members who completed the OIF’s second COVID-19 survey. Our COVID-19 surveys are essential to tracking how the pandemic...
Transitioning from Pediatric to Adult Care
Introduction Teen and young adult years are a critical time for major life changes. An important adjustment for youth who have OI is moving...
Travel for People with OI
Besides an adventuresome spirit, the key to enjoyable travel is getting as much information as possible ahead of time. The following websites and businesses...
Treating Vertebral Compression Fractures
Compression fractures are a common, painful problem for children and adults who have OI. This occurs when an injury causes the spinal bone or...
Treatment Concerns for Children with OI
Treatment Concerns for Children with OI The type of OI and degree of severity will affect the treatment plan. All people with OI benefit...
Understanding SSI & SSDI
The Social Security Administration is responsible for two major programs that provide benefits based on disability: Social Security Disability Insurance (SSDI), based on prior...
Update from the CDC on Pediatric COVID-19 Vaccine
The OIF’s Medical Advisory Council recommends following the Centers for Disease Control and Prevention (CDC) COVID-19 guidelines. The COVID-19 Toolkit is an ever-evolving resource, and it...
Update from the Centers for Disease Control and Prevention on COVID-19 Booster Shots
Update from the Centers for Disease Control and Prevention on COVID-19 Booster Shots The OIF’s Medical Advisory Council recommends following the Centers for Disease...
What is Scoliosis?
Scoliosis, a curvature of the spine, is common in children and adults who have OI. Many people with mild OI and almost everyone who...
What You Need to Know about Clinical Trials
Clinical trials are an essential part of developing new treatments (like medications, and vaccines) and test whether a specific treatment under consideration is effective...
Women’s Health: Pregnancy & OI
Deborah Krakow, MD – Professor and Chair of Obstetrics and Gynecology, University of California, Los Angeles