FOP Family Gathering

FOPFamilyGatheringDec2017_SanFranFNL.jpgThe 2017 Family Gathering was held at the Palace Hotel, San Francisco, CA from December 1-3, 2017.  Read about the 2017 Family Gathering. The theme was Connect, Learn, Grow. Visit the IFOPA Flickr page to view photos of the event.

The following speakers from the Gathering are pleased to share their presentations below.

Clinical Studies & Trials and You

How do I Decide Which Clinical Trial is Right for Me?
Genetic Counselor Marta Sabbadini, PhD, MS, LCGC discusses thoughtful and informative key considerations when deciding to participate in a clinical trial.

Clinical Trials: Your Choice, Your Role, Your Responsibility
Adam Sherman, IFOPA Research Development & Partnerships Director, provides an overview of the drug development and approval process and the role you play in clinical trials.

FOP Research: Where Are We & Where are We Going

IFOPA: Supporting the FOP Research Community
Adam Sherman, IFOPA Research Development & Partnerships Director, shares about the variety of ways the IFOPA supports FOP research.  

The Target Range: Hope for Escape from a Prison of Bone
Frederick Kaplan, MD discusses the targets that have been identified for developing treatments for FOP.

Mobility and Injury Prevention Strategies in FOP

Physical Therapist Jeannette Lee, PT, PhD shares insight into mobility and prevention strategies the FOP community can utilize. View Dr. Lee's presentation.

Pain Management in FOP

Evidence-based Pain Management Part 1
Evidence-based Pain Management Part 2
Anesthesiologist Xiaobing Yu, MD provides an overview of the different facets of pain management for the FOP community.

Integrative Approaches to Pain and Symptom Management
Pediatrician David Becker, MD, MPH, MA, LMFT who specializes in integrative medicine, discusses various techniques of pain management for the FOP community.

Surgery and Anesthesia

What I Need to Know about Surgery and Anesthesia with FOP Part 1
What I Need to Know about Surgery and Anesthesia with FOP Part 2
Anesthesiologist Zvi Grunwald, MD explains how to prepare for surgery and considerations for anesthesia relevant to the FOP community.

The IFOPA and You

View the presentation from Michelle Davis, Executive Director, and Anitha Devadason, Program Manager Serving Patients and Families, which outlines programs and services offered by the IFOPA and ways you can get involved.

What You Have Taught Us About FOP Through the FOP Patient Registry

FOP Registry: Connecting the FOP Research Community
Adam Sherman, IFOPA Research Development & Partnerships Director, shares key findings from the FOP Patient Registry and outlines how patients can contribute their FOP story. 


2016 Family Gathering

The 2016 Family Gathering was held in St. Louis, Missouri, November 4-6, 2016. Learn more about the IFOPA's first regional Family Gathering.

Stay in the Know About FOP Family Gatherings

To make sure you get updates on plans for future FOP Family Gatherings, send an email to familygathering@ifopa.org and you'll be added to the email list. 

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