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!

GlobalGenes Logo

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”

AmberAmber 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.

SLC-NIH1.jpg
SLC6A1 Connect CEO Amber Freed with Debbie Drell (director of Membership for NORD, The National Organization for Rare Disorders), Christopher P. Austin, M.D. (director of the NCATS, National Center for Advancing Translational Sciences, at the National Institutes of Health), and Monica Weldon (President/CEO/Founder of Bridge the Gap – SYNGAP Education and Research Foundation).
SLC-NIH3
Amber Freed speaking to the panel at the NIH event in August 2018.
SLC-NIH2
Amber Freed with Monica Weldon at the NIH event in August 2018.

2018 Global Genes Rare Patient Advocacy Summit
RARE
Amber Freed and Michelle Bassi at Global Genes in October 2018.

2018 Rare Diseases and Orphan Products Breakthrough Summit
AES Speaking

2018 American Epilepsy Society Annual Meeting
AES TableSLC6A1 Booth in the American Epilepsy Society exposition hall.

International SLC6A1 Symposium
Roundtable
First SLC6A1 Symposium in November 2018.