Helping Hands for GAND Hosts 3rd Biennial Gathering & Scientific Conference
July 14, 2022
ALISO VIEJO, Ca.–(BUSINESS WIRE)–Global Genes, a leading patient advocacy organization and Helping Hands for GAND, which raises awareness and support for families affected by GATAD2B-associated neurodevelopmental disorder (GAND), kicked off its biennial Gathering & Scientific Conference in Mason, Ohio today. The three-day event aims to gather individuals living with GAND and their families alongside professionals to gain valuable insights into the latest development and ongoing scientific research on GAND from specialists, researchers and speech-language pathologists.
GAND is an ultra-rare genetic disorder in which the GATAD2B gene, an essential gene for normal cognitive development, is mutated. In most cases the mutation is de novo, not inherited from either parent. This mutation causes challenges with development and speech. As of July 2022, there are approximately 250 known cases of affected individuals with GAND worldwide from 34 countries.
“In general, families of those impacted by GAND rarely have the opportunity to meet—which can be incredibly isolating. The biennial GAND Gathering & Scientific Conference brings together families from all over the world to make meaningful connections, access resources, and provide education that may otherwise not be accessible,” said Jennifer Martin, President of Helping Hands for GAND. “Many rare disease families have never been properly educated on the basics of genetics or their specific mutation, and this gathering is incredibly impactful to the overall scientific progress of GAND.”
Over the next three days, participants will hear from leading experts including:
- Kristen McConnell, Secretary of Helping Hands for GAND
- Lisa Leonard, MA, CCC-SLP, Speech-Language Pathologist at the Children’s Hospital for Rehabilitation Cleveland Clinic
- Taylor Dyer, Client Services Coordinator for 4 Paws for Ability
- Juan Young, PhD, Neurobiologist and Researcher at University of Miami
- Tyler Pierson, MD, PhD, Clinical Pediatric Neurologist and Researcher at Cedars-Sinai Medical Center
The biennial GAND Gathering & Scientific Conference is made possible through a grant from Global Genes, a leading rare disease patient advocacy organization as part of its RARE-Meet Ups program which aims to fund critical education and much-needed in-person collaboration for rare disease patients, caregivers, and advocates.
About Helping Hands for GAND
Helping Hands for GAND is a 501(c)(3) non-profit organization working to support individuals and families affected by GATAD2B-associated neurodevelopmental disorder (GAND), to increase awareness, and to work toward research and treatment opportunities to enrich the lives of those with this rare genetic condition. HHFG aims to help GAND families better understand this disorder and connect them with other GAND families, raise awareness of GAND among the general population as well as medical and support professionals, and increase research and treatment opportunities for the GAND community through establishing a patient registry and by facilitating and funding worthwhile studies.
About Global Genes
Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. In pursuit of our mission, we connect, empower, and inspire the rare disease community to stand up, stand out, and become more effective on their own behalf — helping to spur innovation, meet essential needs, build capacity and knowledge, and drive progress within and across rare diseases. We serve the more than 400 million people around the globe and nearly one in 10 Americans affected by rare diseases. If you or someone you love has a rare disease or are searching for a diagnosis, contact Global Genes at 949-248-RARE or visit our Resource Hub.
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