Our Conference Planning Committee has been hard at work for months getting ready for what we know will be our best conference yet. GFPD Board President, Melissa Bryce Gamble, answers a few questions about this year’s new location and what families attending the conference can expect from the experience.
Melissa, this is the fifth GFPD Family and Scientific Conference. Can you tell families a little bit about the purpose of our conference, and what they can expect this summer?
Sure! The GFPD Family and Scientific Conference was born out of the desire to get families together with other families like their own, often for the very first time. As we know, being affected by such a rare disease means many of us might never meet another PBD family in our everyday lives. Since the first Family and Scientific Conference in 2011, we have brought together over 550 people at our biennial conferences, and we hope to meet even more families this summer in Washington, DC.
The focus of this year’s conference is on patient and family engagement, with presentations and panel discussions with researchers and clinicians, experts in Deafblind education, hospice care, and patient advocacy, as well as a focus group project that will be led by Dr. Meena Mahadevan of Montclair State University in New Jersey. Dr. Mahadevan will facilitate a conversation among parent participants who wish to help uncover the unmet health needs of patients with Zellweger Spectrum Disorder, as well as illuminate the burdens faced by families and caregivers.
Why is the conference moving to Washington DC this summer?
We’ve had great attendance and experiences in three other cities in years past, and this year we found scientific opportunities in the DC area that we couldn’t pass up! We will be co-hosting a scientific conference during the two days prior to our Family Conference, along with Dr. Joe Hacia, one of our Scientific Advisory Board members. Proximity and access to the National Institutes of Health in DC, has allowed Dr. Hacia to invite an impressive slate of world-class researchers and clinicians to come together to discuss, debate, and ultimately shape the future of peroxisomal disorder research. Dr. Francis Collins, the Director of the NIH will be the keynote speaker for the Scientific Conference. As past participants at our conferences know, having the rare opportunity to meet and talk with scientists and medical professionals about our own children is a one-of-a-kind benefit to attending GFPD conferences.