Registration for the 2024 Family and Scientific Conference is now closed.
For questions and inquiries email Katie Sacra at katie@thegfpd.org
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 3,000 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.
WARRIOR CAMP
The 2024 GFPD Family and Scientific Conference will provide children and GFPD Warrior attendees with the opportunity to attend Warrior Camp, Campouts, and Sibshops.
Warrior Camp is a unique GFPD Family Program designed for GFPD Warriors, their siblings, and other children attending the GFPD Family and Scientific Conference. Warrior Camp is excited to provide varied programming to meet the needs of our campers, which includes the following three spaces:
CAMP CHAMP ROOM is the largest camp room with games, art, ball pits, and more. As the largest room in this camp, the Camp Champ Room is the perfect choice for those campers who desire a lot of stimulation and activity.
HERO HAVEN is a sensory friendly room for our campers who benefit from a quieter and calmer space, or who may become overstimulated with too much activity. Room setup is completed with input from our sensory experts. This room also gives children a chance to take a break from other areas when they need to recharge and find their balance.
TEEN TOPIA is a space tailored to our older campers including movies, video games, art projects, puzzles, etc. The Teen Room offers an environment where campers can connect with other teenagers who understand their challenges and share their interests.
Whether it’s in the Main Camp, Sensory Friendly, or Teen Room, all campers can experience the type of stimulation that makes them feel most comfortable within these spaces. The camp’s programming is designed to cater to the needs of all campers and is supported by a team of fellows who ensure that all campers feel safe, comfortable and engaged. The GFPD Fellows are part of theGFPD Warrior Camp Fellowship Programthat was instituted in 2022 to provide the next generation of young professionals with an immersive hands-on experience with individuals affected by rare diseases, and their families. Each fellow has received background checks and participated in virtual and in-person training prior to the conference. The training includes several areas including peroxisomal disorders, sensory integration 101, techniques for engagement with individuals with multi-sensory loss, working with individuals with multiple disabilities and multi-system diseases, as well as an in-person Deaf-Blind simulation and hands-on training to set up an environment for individuals with sensory losses.
Additional offerings during the 2024 GFPD Family and Scientific Conference includes campout and sibshops.
Campoutsprovide children aged 3-13 years and GFPD Warriors with the opportunity to complete and participate in activities at breakout sessions designed and led by Dr. Meagan Moreland with support from GFPD Warrior Camp Fellows.
Sibshopsprovide brothers and sisters of children with special needs an opportunity to meet other siblings in a relaxed, recreational setting.Sibshopsis a “national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special developmental, health, and mental health needs.”
We recognize that having a sibling with special needs can be challenging, but it doesn’t have to be isolating. Sibshops offer a unique opportunity for siblings to come together, share their experiences, and support each other. Siblings attending Sibshops will leave with new friends and an improved ability to cope with the challenges they face. It’s important to remember that Sibshops are not therapy, but they can be therapeutic, and should never be considered childcare. The program provides siblings with a fun experience where they also receive peer support and information within a recreational context.
GFPD Sibshops launched in 2022 and we are happy to provide GFPD young brothers and sisters, ages 8-17 years, with another year of peer-to-peer support. GFPD Sibshops are facilitated by First Generation Sibshop Facilitators who have completed training through the Sibling Support Project.
Warrior Camp, Camp-Outs and Sibshops are included in conference registration, but additional enrollment is required to participate in all of these offered programs. Contact Katie Sacra atkatie@thegfpd.orgor Kylie Putnam atkylie@thegfpd.orgto arrange and complete the enrollment and intake process.
The GFPD strives to make our conferences accessible to all patients, families and caregivers regardless of financial limitations. Our attendees travel from all over the globe to converge in one place to gather, share, learn, and move forward, together. Conference fees for GFPD Warriors (patients of any age) are $1000. We strongly encourage all GFPD Warriors, families and caregivers to seek financial assistance from resources such as: your state’s deaf-blind project, The ARC, your state’s council on developmental disabilities, and other rare disease organizations.
