CHOC, UCI Health to Hold Symposium for Rare Disease Community
Michael Peters
Wednesday, March 23, 2022
Children’s Health of Orange County (CHOC) and UCI Health will co-host a virtual event that will bring together more than 100 clinicians, families, researchers, advocates, and students to accelerate efforts for those living with rare diseases.
The Inaugural CHOC and UCI Rare Disease Symposium & Family Conference, from 10:30 a.m. to 3 p.m. PST on March 11, 2022, will provide an opportunity for participants to share new perspectives, ideas, and collaborations on such topics as metabolic disorders, the power of data science, and gene therapy.
In November 2021, CHOC and UCI Health were jointly designated a National Organization for Rare Disorders (NORD) Center of Excellence, joining a new and highly select group of 31 medical centers seeking to expand access and advance care and research for rare disease patients in the United States.
The March 11 symposium marks the first time since receiving the designation that CHOC and UCI have partnered to host a rare disease symposium. Dr. Jose Abdenur, chief of the division of metabolic disorders and director of the metabolic laboratory at CHOC, is the primary representative in the NORD Center of Excellence partnership. He works closely with Dr. Virginia Kimonis, a professor in the Division of Genetic and Genomic Medicine in the Department of Pediatrics at UCI.
Other topics to be covered at the symposium include lysosomal storage diseases, autism, newborn screening, genetic syndromes, measuring patient impact, and how rare disease research advances the understanding of all diseases.
The keynote speaker will be Dr. Marshall Summer, division chief, genetics and metabolism and director of the Rare Disease Institute at Children’s National Hospital in Washington, D.C.
The UCI School of Medicine has designated the live March 11 event for a maximum of four AMA PRA Category 1 credits. To register, click here.
About Children’s Health of Orange County (CHOC): Affiliated with the University of California, Irvine, CHOC’s pediatric healthcare system includes two state-of-the-art children’s hospitals in Orange and Mission Viejo, a network of primary and specialty care clinics serving children and families in four counties, and several clinical programs of excellence providing the highest levels of care for the most serious pediatric illnesses and injuries, both physical and mental. CHOC’s research and innovation institutes are focused on translating real patient needs into real-world treatments so every child can live the healthiest and happiest life possible. To learn more, visit www.choc.org.
About the University of California, Irvine: Founded in 1965, UCI is the youngest member of the prestigious Association of American Universities and is ranked among the nation’s top 10 public universities by U.S. News & World Report. The campus has produced three Nobel laureates and is known for its academic achievement, premier research, innovation and anteater mascot. Led by Chancellor Howard Gillman, UCI has more than 36,000 students and offers 224 degree programs. It’s located in one of the world’s safest and most economically vibrant communities and is Orange County’s second-largest employer, contributing $7 billion annually to the local economy and $8 billion statewide. For more on UCI, visit www.uci.edu.
The Inaugural CHOC and UCI Rare Disease Symposium & Family Conference, from 10:30 a.m. to 3 p.m. PST on March 11, 2022, will provide an opportunity for participants to share new perspectives, ideas, and collaborations on such topics as metabolic disorders, the power of data science, and gene therapy.
In November 2021, CHOC and UCI Health were jointly designated a National Organization for Rare Disorders (NORD) Center of Excellence, joining a new and highly select group of 31 medical centers seeking to expand access and advance care and research for rare disease patients in the United States.
The March 11 symposium marks the first time since receiving the designation that CHOC and UCI have partnered to host a rare disease symposium. Dr. Jose Abdenur, chief of the division of metabolic disorders and director of the metabolic laboratory at CHOC, is the primary representative in the NORD Center of Excellence partnership. He works closely with Dr. Virginia Kimonis, a professor in the Division of Genetic and Genomic Medicine in the Department of Pediatrics at UCI.
Other topics to be covered at the symposium include lysosomal storage diseases, autism, newborn screening, genetic syndromes, measuring patient impact, and how rare disease research advances the understanding of all diseases.
The keynote speaker will be Dr. Marshall Summer, division chief, genetics and metabolism and director of the Rare Disease Institute at Children’s National Hospital in Washington, D.C.
The UCI School of Medicine has designated the live March 11 event for a maximum of four AMA PRA Category 1 credits. To register, click here.
About Children’s Health of Orange County (CHOC): Affiliated with the University of California, Irvine, CHOC’s pediatric healthcare system includes two state-of-the-art children’s hospitals in Orange and Mission Viejo, a network of primary and specialty care clinics serving children and families in four counties, and several clinical programs of excellence providing the highest levels of care for the most serious pediatric illnesses and injuries, both physical and mental. CHOC’s research and innovation institutes are focused on translating real patient needs into real-world treatments so every child can live the healthiest and happiest life possible. To learn more, visit www.choc.org.
About the University of California, Irvine: Founded in 1965, UCI is the youngest member of the prestigious Association of American Universities and is ranked among the nation’s top 10 public universities by U.S. News & World Report. The campus has produced three Nobel laureates and is known for its academic achievement, premier research, innovation and anteater mascot. Led by Chancellor Howard Gillman, UCI has more than 36,000 students and offers 224 degree programs. It’s located in one of the world’s safest and most economically vibrant communities and is Orange County’s second-largest employer, contributing $7 billion annually to the local economy and $8 billion statewide. For more on UCI, visit www.uci.edu.
We would like to hear from you! If you have any questions, please do not hesitate to contact us. We are always looking forward to hearing from you! We will do our best to reply to you within 24 hours !