Information for Adult Health

The Osteogenesis Imperfecta Foundation is pleased to introduce the Adult Health Toolkit: Information for Adults Living with OI, Their Families, and Medical Professionals to help you navigate the many aspects of managing your health as an adult living with OI.

“I am thrilled to announce the launch of the first-ever OI Adult Health Toolkit which provides important information to OI adults, their families, and medical professionals! Because OI is a rare disease, it can be difficult to find a doctor who understands OI and, more specifically, how OI affects adults. This resource provides you and your caregivers the knowledge to help educate your healthcare providers and to effectively advocate for your health care needs. The Toolkit contains medically verified information in one place with helpful worksheets that adults can use to keep track of their medical information and their healthcare team. I hope that you find this Toolkit to be a helpful resource as you navigate your OI health care journey!” – Tracy Mulroy

Tracy Mulroy, former OIF Board Member and Chair of the Jamie Kendall Fund for Adult Health, is serving as the OIF’s Adult Health Initiative Community Chair and has played an instrumental role in the creation of this toolkit. As an individual with OI herself, her deep understanding of the unique challenges faced by those living with OI informed not only the selection of topics, but also the tone of the toolkit, among the many other informative contributions. Her input helped the OIF recognize and address the topics most important to the adult OI community.

Click here to access a pdf version of the Adult Health toolkit.

The toolkit was made possible thanks to the generous support of the Randolph D. Rouse Foundation. We are so thankful to Dr. Kara Ayers, Dr. Michelle Fynan, Dr. Mahim Jain, Dr. Deborah Krakow, Dr. Joan Marini, Dr. Sandesh Nagamani, Dr. Eric Orwoll, Dr. Alicia O’Sullivan, Dr. Cathleen Raggio, Dr. Robert (Sandy) Sandhaus, Dr. Laura Tosi, Tracy Mulroy, and the members of the OI Foundation Medical Advisory Council for their assistance in the development of the Adult Health Toolkit: Information for Adults Living with OI, Their Families, and Medical Professionals.

To connect with the OIF Health Educator or request a print version of the toolkit, please contact [email protected] or call 301-947-0083.

This toolkit is also available in Spanish.
Herramientas de Salud Para Adultos
Informacion Para Adultos Que Viven con OI, Sus Familais y Profesionales de la Salud

This toolkit is also available in French, thanks to the generous support of the Canadian OI Society.
Ostéogenése Imparfaite Guide Sur la Santé des Adultes
Informations Pour Les Adultes Vivant Avec L’OI, Leurs Familles et Les Professionnels de la Santé
CLICK HERE to view the Adult Health Toolkit.

Additional Video and Podcast Resources