Local Health Care Providers

2021 Virtual FOP Family Gathering Information for Local Health Care Providers

The IFOPA recognizes the critical role our families local health care providers play in helping them navigate the challenges of living with FOP. We are pleased to be able to offer the annual FOP Family Gathering virtually this year and invite local health care providers who may not have had the opportunity to travel to attend this event in the past. Below please find a preview of the preliminary agenda and the link to register for this event free of charge.

How to Register

To participate in the 2021 FOP Family Gathering, please register for free by visiting ifopa.org/2021_family_gathering_registration and using the discount code HC2021 at checkout.

Preliminary Agenda

Eastern Standard Time (EST)

Greenwich Mean Time (GMT)

Thursday, November 18 

8:00 am EST 12:00 GMT Virtual Pre-Conference Tour
10:00 am to 1:00 pm EST 14:00 to 17:00 GMT New Family Pre-Conference 
8:00 pm EST             20:00 GMT Virtual Pre-Conference Tour

 

Eastern Standard Time (EST)

Greenwich Mean Time (GMT)

Friday, November 19 

9:00 to 10:00 am EST 13:00 to 14:00 GMT Dr. Kaplan's Annual Research Update
10:10 to 11:40 am EST 14:10 to 15:40 GMT Common Health Questions for FOP Medical Experts Panel 1
12:20 to 1:50 pm EST             16:20 to 17:50 GMT FOP Clinical Trials
2:00 to 3:00 pm EST 18:00 to 19:00 GMT FOP Clinical Trials 2
3:30 to 5:00 pm EST 19:30 to 21:00 GMT

Small Group Discussions **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) 
  • Teens with FOP (ages 13-17) 
  • Spouses with Significant others of Individual with FOP
  • Siblings of Individuals with FOP
  • Extended Family and Support Network of Individuals with FOP
  • Bereaved Family Members of Individuals with FOP 

*Additional languages specific small group discussion sessions will be hosted in collaboration with leaders from national organizations and at times convenient for those participants on Friday afternoon/evening or Saturday morning

5:00 to 7:00 pm EST 21:00 to 23:00 GMT Exhibit Hall Open and Time to Connect in the Lounge 
7:00 pm EST 23:00 GMT Community Social Events 

 

Eastern Standard Time (EST)

Greenwich Mean Time (GMT)

Saturday, November 20

6:00 to 8:00 am EST 10:00 am to 12:00 GMT  Community Social Events
8:10 to 9:40 am EST 12:10 to 13:40 GMT Common Health Questions for FOP Medical Experts Panel 2
9:40 to 11:00 am EST             13:40 to 15:00 GMT Exhibit Hall Open or Self-care Break
Concurrent Sessions 
11:00 am to 12:30 pm EST 15:00 to 16:30 GMT 

Comfort, Care and FOP 

11:00 am to 12:30 pm EST 15:00 to 16:30 GMT Dental Care and Anesthesia Experts Panel 
11:00 am to 12:30 pm EST 15:00 to 16:30 GMT IFOPA Research Update and Participating in the FOP Registry 
Concurrent Sessions 
12:40 to 2:10 pm EST 16:40 to 18:10 GMT

Living Well with FOP and the Ability Toolbox Program

12:40 to 2:10 pm EST 16:40 to 18:10 GMT Facing the Challenge in the Absence of a Treatment 
2:50 to 4:20 pm EST 18:50 to 20:20 GMT

Small Group Discussions:

  • Empowering Young Adults with FOP: Only Open to Young Adults with FOP, a safe and supportive space to experience the connection that exists in the FOP community and have the opportunity to bond with others in their age group.
  • Growing and Advocating with FOP: Life with FOP is full of learning opportunities, join several members of the community as they share their experience growing as a person and an advocate in their FOP journey.
  • Medicaid and Waiver Programs: Applicable for US Families Only, hear from an expert in the Medicaid field and a member of the FOP community who share their insight navigating the Medicaid and waiver programs. 
4:20 to 6:00 pm EST 18:20 to 22:00 GMT

Exhibit Hall Open and Time to Connect in the Lounge

7:00 pm EST 23:00 GMT

Community Social Events 

 

Eastern Standard Time (EST)

Greenwich Mean Time (GMT)

Sunday, November 21 

8:00 to 10:00 am EST 12:00 to 14:00 GMT Exhibit Hall Open or Self-care Break
10:00 am to 11:30 am EST 14:00 to 15:30 GMT

Small Group Discussion:

  • A Closer Look at How We Live with FOP: If you're a fan of the Ability Toolbox program you'll love this second adaptive tools focused session of the weekend hosted by community members who are passionate about sharing their homemade and purchased adaptive tools with the broader FOP community.
  • Pursuing a Career and Following Your Passion: Join in the discussion and learn from individuals pursuing a variety of career paths. They'll share the considerations they weighed and the factors that have been key to their current paths.
  • Additional Session To Be Announced
11:40 to 12:20 pm EST             15:40 to 16:20 GMT

Patient and Family Involvement in the Drug Development and Approval Process

12:30 to 1:15 pm EST 16:30 to 17:15 GMT 

IFOPA Family Services: Connecting and Supporting Families

2:00 to 3:00 pm EST 18:00 to 19:00 GMT

Friend raising and Fundraising to Help #cureFOP

3:10 to 3:30 pm EST 19:10 to 19:30 GMT

Closing Ceremony 

 

Questions about the Family Gathering?

If you have questions about the 2020 Virtual Family Gathering, please contact Hope Newport, Family Services Manager, at [email protected] or +1 (785) 294-1607.

 

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