60th Year Celebration of PK Deficiency as a Genetic Anemia Conference 2022


Agenda: November 5-8, 2022

DateActivity
Saturday, November 5, 2022
7:30 pmThrive Leadership Dinner
Sunday, November 6, 2022
10 am – 2:00 pm
Admiralty Room
Thrive Leadership Meeting
12 pm – 4:00 pm
Orchid Lounge
Conference Registration
6:30 pm – 8:30 pm
Wantilan Room
Welcome Reception & Dinner
Cash Bar
*Sponsored by Agios
Pharma
Monday 7, November, 2022
7:00 am – 9:00 am
Pacifica Ballroom 3
Breakfast Buffet
*Sponsored by Rocket Pharma
9:00 am – 12:00 pm
Phillipine Sea
Kid’s Program: University of South Florida Graduate Students Celestyn Angot, Andrea Shields
9:00 am – 9:10 am
Pacifica Ballrooms 1-2
Opening Remarks: Tamara Schryver/Carl Lander
9:10 am – 9:30 am
Pacifica Ballrooms 1-2
Historical Perspective of PK Deficiency: Dr. David Nathan
9:30 am – 10:00 am
Pacifica Ballrooms 1-2
Basics of PKD Treatment & Guidelines in Childrens & Adults: Dr. Rachel Grace
10:00 am – 10:30 am
Pacifica Ballrooms 1-2
Understanding the Role of Gene Therapy in PKD: Dr. Ami Shah
10:30 am – 11:00 am
Pacifica Ballrooms 1-2
Break/Exhibits
11:00 am – 11:30 am
Pacifica Ballrooms 1-2
Science Supporting PK-activators & Related Research Update: Dr. Hanny Al-Samkari
11:30 am – 12:00 pm
Pacifica Ballrooms 1-2
Hematologist Panel: Q&A from Audience
12:00 pm – 1:30 pm
Pacifica Ballroom 3
Lunch Buffet, Exhibits, Rest Break
*Sponsored by Agios Pharma
1:30 pm – 1:40 pm
Pacifica Ballrooms 1-2
Welcome Back from Lunch: Tamara Schryver/Libby Garrett
1:40 pm – 2:00 pm
Pacifica Ballrooms 1-2
Advocating with Evidence – Using Registries of Today & the Future: Maaike Eijgenraam, Carl Lander
2:00 pm – 2:45 pm
Pacifica Ballrooms 1-2
Lived Experience – Patient Panel #1, Before Y2K:
Bianca Bassett, Jacob Naranjo Solis, Jason Blackman, Carson McGuire
2:30 pm – 3:00 pm
Pacifica Ballrooms 1-2
Break, Exhibits
3:00 pm – 3:45 pm
Pacifica Ballrooms 1-2
Lived Experience – Patient Panel #2, Gen Z & Alpha:
Jennifer/Lily King, Leah O’Conner, Jessica/Travis Kellar, Lindsey Tompkins
3:45 pm – 4:05 pm
Pacifica Ballrooms 1-2
Achieving a Better Quality of Life – PKD Community Priorities: Lily Canon
4:10 pm – 4:30 pm
Pacifica Ballrooms 1-2
Advocating for the Future: Where Do We Go From Here? Tamara Schryver
Free Time
5:00 pm – 8:00 pm
Promenade Deck
60th Anniversary Celebration: Family Social
Cash Bar
Raffle
Tuesday, November 8, 2022Return home or optional event: 1 day, 2 park pass to Universal Studios
Agenda subject to change


QUESTIONS: 

Please contact us with any questions you may have. We will be updating this website regularly. 

info@thrivewithpkd.org 


Event Sponsors