Family Gathering Agenda

Eastern Standard Time (EST)

Greenwich Mean Time (GMT)

Friday, November 20

9:00 to 10:00 am EST 14:00 to 15:00 GMT The Leaky FaucetFred Kaplan, MD., University of Pennsylvania
10:00 am to 11:30 am EST 15:00 to 16:30 GMT Common Health Questions for FOP Medical Experts Panel (US Treaters) Panelists: Drs. Mona Al Mukaddam, Ed Hsiao, Fred Kaplan and Bob Pignolo 
11:30 am to 12:00 pm EST              16:30 to 17:00 GMT Comfort Break and Time to Connect in the Lounge 
12:00 to 1:30 pm EST 17:00 to 18:30 GMT

FOP Clinical Trials, Part 1

Rose Marino, MD and Fei Shih, MD, PhD, Ipsen

Andrew Rankin, PhD, Regeneron Pharmaceuticals, Inc

Marelise Eekhoff, MD, PhD, Bernard Smilde, MSC, MD, PhD and Paul Yu MD, PhD STOPFOP

1:30 to 2:00 pm EST 18:30 to 19:00 GMT Comfort Break and Time to Connect in the Lounge
2:00 to 3:00 pm EST 19:00 to 20:00 GMT

FOP Clinical Trials, Part 2

Claudia Ordoñez, MD, Keros Therapeutics

Kurt Brown, MD, Heather Jones, RN, and Paul Smith, PhD, Incyte

3:00 to 3:30 pm EST 20:00 to 20:30 GMT Comfort Break
3:30 to 5:00 pm EST 20:30 to 22:00 GMT

Small Group Discussions These sessions are CLOSED TO BIOTECH, PHARMA and OTHER CORPORATE ENTITIES.

Spanish Speaking Attendees
Portuguese Speaking Attendees

**The following sessions are intended for English speaking participants
Mothers of Individuals with FOP
Fathers of Individuals with FOP
Adult Men with FOP (ages 18 and over)
Adult Women with FOP (ages 18 and over)
Spouses and Significant other of Individuals with FOP
Siblings, Extended Family and Support Network of Individuals with FOP
Bereaved Family Members of Individuals with FOP

5:00 to 7:00 pm EST 22:00 to 24:00 GMT Exhibit Hall Open and Time to Connect in the Lounge
7 pm EST 24:00 GMT

Community Social Events 

Bingo
Happy Hour
Caregiver Campfire

Saturday, November 21

4 to 5:30 am EST 9:00 to 10:30 GMT

Small Group Discussions for International Participants based on Country These sessions are CLOSED TO BIOTECH, PHARMA and OTHER CORPORATE ENTITIES.

English speaking attendees (Family and Support Network)

English speaking attendees (Individuals with FOP)
French speaking attendees
German speaking attendees
Mandarin speaking attendees
Polish speaking attendees
Russian speaking attendees

6 to 8 am EST 11:00 to 13:00 GMT Exhibit Hall and Time to Connect in the Lounge and Small Group Discussion for Italian Speaking Attendees
8 to 9:30 am EST 13:00 to 14:30 GMT

Common Health Questions for FOP Medical Experts Panel (International Treaters)

Panelists: Drs. Genevieve Baujat, Patricia Delai, Richard Keen and Christian Scott

9:30 to 11 am EST 14:30 to 16:00 GMT Community Social Events
Choose 1:
11 am to 12:30 pm EST 16:00 to 17:30 GMT

Pain Management Panel

Panelists Include: Peter Abaci, MD , Debra Kimless, MD, Karen Harrison 

11 am to 12:30 pm EST 16:00 to 17:30 GMT

Dental Care and Anesthesia Experts Panel

Panelists Include: Drs. Corrie Crowe, Clive Friedman and Zvi Grunwald

11 am to 12:00 pm EST 16:00 to 17:00 GMT IFOPA Research Update, Adam Sherman, International FOP Association
Choose 1:    
12:30 to 2 pm EST 17:30 to 19:00 GMT

Living Well with FOP and the Ability Toolbox Program

Karen Kirchhoff, MSPT, International FOP Association
Panelists Include: Kristi Gonzales, Brian Harwell and Ana Laura Tavares

12:30 to 2 pm EST 17:30 to 19:00 GMT

Complementary Therapies Panel

Panelists Include: Michel Lemoine, MD, PhD, Veronica Winkler, CCC-SLP, Kelle Oestreich, MSHS, RRT

12:30 to 1:30 pm EST 17:30 to 18:30 GMT When Your Heart Hurts: Weaving the threads of loss and change into the beautiful tapestry of your life!, Sharon A. Neumann, SPMC AdvGRS
2 to 2:30 pm EST 19:00 to 19:30 GMT Comfort Break and Kids Contest 
2:30 to 4:00 pm EST 19:30 to 21:00 GMT

Small Group Discussions

Adaptive Tool Use and Home Adaption Problem Solving
Implementing Self-care and Protecting Your Emotional Health
Virtual Fundraising for the IFOPA
FOP Management and Resources for Children
FOP Management and Resources for Adults in their 20s
FOP Management and Resources for Adults over the age of 30

4:00 to 6:00 pm EST 21:00 to 23:00 GMT Exhibit Hall Open and Time to Connect in the Lounge
7 pm EST 23:00 GMT

Community Social Events 

Share Your Strength Talent Show 

Photo Booth

Sunday, November 22

8 to 10 am EST 13:00 to 15:00 GMT Exhibit Hall Open and Time to Connect in the Lounge
10 to 11 am EST 15:00 to 16:00 GMT Patient and Family Involvement in Clinical Research, Kendall Davis, MPH, PRA Health Sciences
11 to 11:45 am EST 16:00 to 16:45 GMT IFOPA Family Services: Connecting and Supporting Families, Hope Newport, CCLS and Karen Kirchhoff, MSPT International FOP Association
11:45 am to 12:15 pm EST 16:45 to 17:15 GMT Comfort Break and Kids Contest 
12:15 to 1 pm EST 17:15 to 18:00 GMT Participating in the FOP Registry, Sammi Kile, International FOP Association
1 to 1:45 pm EST 18:00 to 18:45 GMT Friendraising and Fundraising to Help #cureFOP, Cathryn Roys, International FOP Association
Closing Remarks, Michelle Davis, International FOP Association

 

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