Dr. Hetty Weinstein, doctor and mother of an affected boy, delivers a key note at the Epilepsy Foundation
SLC6A1 Connect Founder, Amber Freed, is Nominated for the 2019 RARE Champion of Hope Nomination by Global Genes!
Each year, Global Genes, a leading global rare disease patient advocacy organization, asks the community to nominate those deserving of recognition for their extraordinary efforts in rare disease. Nominations are accepted in the areas of advocacy, medical care and treatment, and science and technology. This year, SLC6A1 Connect’s Amber Freed was nominated for the prestigious award.
“Equitable Access to Rare Disease Therapies Workshop”
Amber Freed with Dr. Marshall Summar, chair of the NORD’s scientific and medical advisory committee.
“The Growing Promise is Gene Therapy Approaches to Rare Diseases”
As part of our mission to elevate awareness, consolidate research and treatment efforts, and optimize patient outcome for SLC6A1, our CEO, Amber Freed, has begun an advocacy campaign, starting with her recent attendance of an event at the National Institutes of Health in Washington D.C.