Rare Bone Disease TeleECHO Program: Year 2 Begins Thursday

Rare Bone Disease TeleECHO Clinic Series: Year 2

The Osteogenesis Imperfecta Foundation and the Rare Bone Disease Alliance are excited to announce the Rare Bone Disease TeleECHO Clinic Series. The goal of this educational program, a partnership with Project ECHO™ (Extension for Community Healthcare Outcomes), is to build capacity to safely and effectively diagnose and treat rare bone diseases and disorders.This series uses Zoom videoconferencing, and will take place on the first Thursday of every month at 3pm EST. In each monthly session, faculty members or guest speakers will present a brief didactic presentation, followed by participant-led case presentations and group discussion of the presented cases. The faculty encourages participants to present case studies related to rare bone diseases at each session.

The interdisciplinary faculty in the Rare Bone Disease TeleECHO includes:

Michael Collins, MD National Institutes of Health, NIDCR
Michael Lewiecki, MD University of New Mexico
Eric Rush, MD University of Kansas Hospital
Jay Shapiro, MD Uniformed Services University of Health Sciences
Dolores Shoback, MD University of California San Francisco
Laura Tosi, MD Children’s National Health System

In support of improving patient care, Project ECHO® is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team.

Project ECHO® designates this live activity for a maximum of 1.0 AMA PRA Category 1 CreditsTM. Physicians should claim only the credit commensurate with the extent of their participation in the activity.



August 6, 2020; 3:00pm EST

Melorheostosis: The Genes Behind the Dripping Candle Wax
Timothy Bhattachyrra, MD  Orthopaedic Surgery, NIAMS/NIH

September 3, 2020; 3:00pm EST

Evaluation of Patients with Hyperphosphatemia
Michael Collins, MD Senior Investigator, Skeletal Disorders and Mineral Homeostasis Section, National Institute of Dental and Craniofacial Research/NIH

October 1, 2020; 3:00pm EST

Mechanisms of Bone Loss in Complex Lymphatic Anomalies
Michael Kelly, MD, PhD Professor of Pediatrics, Northeast Ohio Medical University

November 5, 2020; 3:00pm EST

Dental Concerns in Patients with Rare Bone Disorders
Tim Wright, DDS, MS Bawden Distinguished Professor, Division of Pediatrics and Public Health, Adams School of Dentistry, University of North Carolina

December 3, 2020; 3:00pm EST

Generalized Arterial Calcification of Infancy (GACI)
Carlos Ferreira, MD ChiefSkeletal Genomics Unit, National Human Genome Research Institute, NIH

January 7, 2021; 3:00pm EST

Skeletal Surveys – A Systematic Approach
Dorothy Bulas, MD Chief, Department of Radiology, Children’s National Hospital; Professor of Pediatrics and Radiology, George Washington University School of Medicine

February 4, 2021; 3:00pm EST

Jansen’s Disease
Harald Jueppner, MD Chief, Pediatric Nephrology, Massachusetts General Hospital; Professor of Pediatrics, Harvard Medical School

March 4, 2021; 3:00pm EST

Bone Pain in Children
Alison Boyce, MD Associate Research Physician, National Institute of Dental and Craniofacial Research, NIH

April 1, 2021; 3:00pm EST

Multiple Hereditary Exostoses
David S. Feldman, MD Co-Director, Multiple Hereditary Exostoses Center, St. Mary’s Medical Center, West Palm Beach, FL

May 6, 2021; 3:00pm EST

DXA Evaluation in the Child
Catherine Gordon, MD Adolescent Chief, Boston Children’s Hospital; Robert P. Masland, Jr. Chair of Adolescent Medicine, Professor of Pediatrics, Harvard Medical School

June 3, 2021; 3:00pm EST

Adult Hypophosphatasia
Kathryn Dahir, MD Professor of Medicine, Vanderbilt University Medical Center 

July 1, 2021; 3:00pm EST

Evaluation of the Child with Multiple Fractures
Eric. T. Rush, MD, FAAP, FACMG Clinical Geneticist, Children’s Mercy Kansas City; Associate Professor of Pediatrics, University of Missouri-Kansas City School of Medicine; Clinical Associate Professor of Medicine, University of Kansas School of Medicine

If you have any questions, please contact Michael Stewart at Mstewart@oif.org.

CPAG Webinar: An Introduction to Clinical Trials. 

Are you interested in learning about how clinical trials work?

Watch the Coalition of Patient Advocacy Groups (CPAG) Webinar: An Introduction to Clinical Trials.
Tracy Hart, OIF CEO serves as the chair of the Coalition of Patient Advocacy Groups Steering Committee (CPAG). CPAG is the collective representation of patient groups affiliated with the consortia of the Rare Diseases Clinical Research Network (RDCRN), a National Institutes of Health (NIH)-funded research network. CPAG members influence the direction of the Rare Diseases Clinical Research Network as a whole.

CPAG Webinar: An Introduction to Clinical Trials, 7-23-20 from Rare Diseases Network (RDCRN) on Vimeo.

Virtual Conference Recordings Now Available

OIF Virtual Conference session recordings are now available on the OIF website! Watch the recordings at www.oif.org/virtualconference!

We are pleased to be able to offer OIF resources, like the OIF Virtual Conference, free of charge to ensure that anyone that wants to participate, can. If you are able to, we hope that you will donate to support the work of the OI Foundation, which includes providing important programs like this one. Make a gift at https://oif.org/donations/virtualconference/

Join the OIF Book Club Reading Group!

Connect with other adult OIF Book Clubbers by joining the OIF Book Club Reading Group on Facebook! Use this space to share what you’re reading, how you’re fundraising, book recommendations, or even find friends to start a virtual book club with.

To join, visit www.facebook.com/groups/oifoundationbookclub.

For more information or questions please contact Christina at cteufert@oif.org or visit www.oif.org/campaign/OIFBookClub.

Happy National Iced Tea Day!


Today is National Iced Tea Day! If you have yet to participate in Bone China Tea this year, consider hosting a Bone China ICED Tea event! The OIF’s NEW Bone China Iced Tea event will be available all summer long.

Invite your friends and family to sip on tea, soak up the sun, and support the mission of the OI Foundation. Fundraisers like Bone China Tea directly support the mission of the OIF to improve the quality of life for those living with osteogenesis imperfecta through research, education, awareness and mutual support. Now more than ever, we rely on community members like yourself to help us achieve our mission.

To request invitations, contact Christina at cteufert@oif.org. For more information visit, www.oif.org/campaign/bonechinatea. Summer campaign available until August 2020. #NationalIcedTeaDay