The 2024 GFPD Family and Scientific Conference will be held in Washington D.C. on May 26th – 29th, 2024 at the Omni Shoreham Hotel (2500 Calvert St. NW, Washington, DC 20008). This is the ninth major conference for the GFPD that addresses issues for education, scientific research, advocacy, and support for peroxisomal disorders, a rare group of genetic disorders affecting approximately 2,000 births each year around the globe. Organizers expect more than 400 patients, families, and professionals to attend. In addition to hosting the Externally Led – Patient-Focused Drug Development (EL-PFDD) meeting during the 2024 conference, several favorite conference sessions will also return including “Professional Pop-ins”, “Peroxisomal Disorder Primer,” and “A Day in the Life: DeafBlind Simulation.” Warrior Camp and SibShops will also be returning! The gathering is designed to convene families of patients and the scientific and medical communities supporting the health and research needs of affected patients. Registration for the 2024 GFPD Family and Scientific Conference is open to all attendees.
PRELIMINARY AGENDA
(Subject to Change)
Saturday, May 25th
2:00 – 7:00 pm Registration for All Attendees
5:00 – 7:00 pm Grab and Go (or stay!) Dinner
5:30 – 6:30 pm Extended Family Meet and Greet
Sunday, May 26th
7:30 – 9:00 am Breakfast
9:00 – 10:00 am Welcome to The GFPD Conference
11:00 – 11:15 am Peroxisomal Disorder Primer with Dr. Wangler
11:15 – 11:30 am Your Clinical Elevator Pitch
12:00 – 1:00 pm Lunch
1:30 – 2:30 pm Remembrance Ceremony
1:30 – 2:30 pm Breakout: Adults with Peroxisomal Disorders
3:00 – 4:00 pm Day in the Life: Deafblind Simulation
3:00 – 4:00 pm Breakout: Parents of Adults with Peroxisomal Disorders
3:00 – 4:00 pm Breakout: Bereavement Support
4:30 – 4:45 pm NORD Registry: Everything You Need to Know
4:30 – 5:30 pm Breakout: Extended Family
6:00 – 8:00 pm Welcome, Opening Dinner, and Research Updates
Monday, May 27th (Memorial Day)
6:30 – 8:30 am Labs
7:30 – 9:00 am Breakfast
8:45 – 9:00 am Morning Welcome
9:00 – 9:30 am Palliative Care and Home Health
9:30 – 11:30 am Professional Pop-ins | Now Includes Meetings with Medical and Scientific Advisors
11:00 am – 12:00 pm Breakout: Extended Family
11:00 am – 12:00 pm Breakout: Bereavement Support
12:00 – 1:00 pm Lunch
1:00 – 4:00 pm Professional Pop-ins | Now Includes Meetings with Medical and Scientific Advisors
5:30 – 8:30 pm Island Dinner and Dance
6:30 – 6:45 pm Breaking Down Barriers
Tuesday, May28th
8:00 – 9:00 am Breakfast
8:30 – 9 am Morning Welcome
9:00 am – 12:00 pm Externally Led-Patient Focused Drug Development Meeting: Symptoms and Impacts
12:00 – 1:00 pm Lunch
1:30 – 4:15 pm Externally Led-Patient Focused Drug Development Meeting: Symptoms and Impacts
5:30 – 7:00 pm Grab and Go (or stay) Dinner
7:00 – 8:30 pm Parent Night
Wednesday, May 29th
7:30 – 9:00 am Breakfast
9:00 – 10:00 am Peroxisomes and People: Research Updates!
9:30 – 11:00 am Breakout: Bereavement Support
10:00 – 11:15 am Medical and Scientific Advisors Panel
11:15 – 11:30 am Empowering your Providers with TeleEcho
12:00 – 1:00 pm Lunch
1:30 – 2:30 pm Warriors in Action: Getting Involved in Advocacy Fundraising, and Awareness
2:30 – 2:45 pm Engaging with the GFPD on Social Media
2:30 – 3:30 pm Breakout: Extended Family
2:45 – 3:15 pm Diversity Equity and Inclusion for GFPD Warriors
3:15 – 4:00 pm Health Literacy Resources for Real Life
3:30 – 4:30 pm Panel: What’s Next
5:30 – 7:30 pm GFPD Family Farewell Dinner