GFPD 2022 Family & Scientific Conference
Charlotte, North Carolina
As of 5/20/2022 registration is closed for the 2022 GFPD Family and Scientific Conference being held in Charlotte, N.C., from June 15-19.
However, if you are a newly diagnosed family, please reach out to email@example.com for information about last minute conference registration.
The 2022 GFPD Family and Scientific Conference is the eighth major meeting for the Foundation that addresses issues for education, scientific research, advocacy and supports for peroxisomal disorders, a rare genetic disorder affecting more than 600 children and families around the world.
Organizers expect more than 400 to attend the conference. The gathering is designed to inform and convene families of patients and the scientific and medical communities supporting the health and research needs of affected patients.
Melissa Bryce, co-founder and executive director of the Foundation, calls the conference a “place of learning, sharing, healing and transforming” for families, medical professionals and scientists working with the disorders.
“After my own daughter was diagnosed with a peroxisomal disorder, I knew that I needed to find supports for not only her care but for our family,” Bryce said. “Even though my daughter, Ginny, passed away in 2015, her legacy lives on through this Foundation. Our biennial Family and Scientific Conference provides much needed education and supports for our families, as well as a place for top researchers and medical professionals to gather to combat these diseases and care for the children with the latest breakthrough treatments.”
Katie Sacra who heads family programs for the Foundation calls the conference a “game-changer for families facing rare diseases.”
“While this disease only affects a handful of families each year, the toll of care and treatment can be enormous,” Sacra said. “We hope that this conference will continue to unite families and professionals for learning, convening and advocating for the best possible outcomes for individuals with peroxisomal disorders, their caregivers and families.”
The Global Foundation for Peroxisomal Disorders supports families worldwide with education and learning materials. Additionally, the organization advocates for better treatment options, funds research and encourages widespread genetic testing.
We have an exciting conference schedule planned and can’t wait for you to join us in North Carolina this summer!