Take a Few Minutes and Share Your FOP Story While You're at the FOP Family Gathering
If you’re making plans to join the IFOPA in San Francisco for the Family Gathering, December 1-3, 2017, you can sign up to share your FOP story while you’re in the City by the Bay. There will be a space on your registration form to indicate your interest in being interviewed onsite at the Gathering.
Writers and a video team will be on hand to get your story so they can create articles for future IFOPA newsletters, e-newsletters, videos, and our social channels. Each interview should only take about a half hour. We’ll get in touch with interview times and location prior to the Gathering. You will have the opportunity to approve any written content before it’s published by the IFOPA.
A trip to San Francisco not in your future? That’s ok! You can always share your FOP story online.
The 2017 Family Gathering will focus on:
- Living with FOP and how to manage FOP day to day
- Connecting FOP’ers and familes
- Sharing how the IFOPA can be helpful to people with FOP and their families
Some sessions already planned for the Gathering include:
- FOP Research: Where Are We & Where are We Going
- What You Have Taught Us About FOP (Clementia Natural History Study and FOP Patient Registry)
- A Panel of FOP Clinicians Answering Your Health Questions (Topics to include: flare-ups, pulmonary health, kidney stones, immunizations, nutrition, and more)
- Surgery and Anesthesia
- Mobility and Injury Prevention in FOP
- Pain Management Strategies
- Clinical Studies & Trials and You, including How Do I Decide Which Trial is Best for Me?
- And more to be announced…
Registration for the San Francisco Family Gathering is open right now.
Registration closes November 20 and hotel reservations must be made by November 9.
You’ll find a more complete event schedule on the website. We hope to see you in San Francisco—and hope you’ll share your story with us. Please contact [email protected] with questions.