Don't miss out!
Have you made plans to join the IFOPA and other FOP families from across the country in San Francisco yet? Monday, November 20 is your last chance to register.
This year’s Gathering will focus on:
- Living with FOP and how to manage FOP day to day
- Connecting FOP’ers and families
- Sharing how the IFOPA can be helpful to people with FOP and their families
You can register online right now.
Here’s a preview of what to expect when you join us on the West Coast:
- FOP Research: Where Are We and 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 lots of time for connecting with and learning from other FOP families!
The Family Gathering will also include clinical appointments (must be reserved in advance) with Drs. Hsiao, Kaplan and Pignolo. Writers and a video team will also be onsite at the Family Gathering to learn more about your FOP story so they can create articles for future IFOPA newsletters, e-newsletters, videos, and our social channels. You can express interest in one or both of these opportunities on your Gathering registration form.
You’ll find more details on the Family Gathering event page on ifopa.org as they become available. If we can answer your questions or assist you in any way, please contact [email protected].
