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. They envision a globally connected community equipped to eliminate the challenges of rare disease.
Global Genes – Global Advocacy Alliance Partner Read More »
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures.
EveryLife Foundation Read More »
By connecting epilepsy centers with each other and with community service providers, and including people with epilepsy and their families, the Epilepsy Learning Healthcare System (ELHS) will empower all people with epilepsy to live their highest quality of life, striving for freedom from seizures and side effects. DSF is proud to be a community partner
Epilepsy Learning Healthcare System Read More »
The Epilepsy Leadership Council (ELC) is made up of individuals representing organizations serving individuals with epilepsy and their families, as well as professionals, and governmental organizations. The mission is to develop and coordinate among its members shared projects that will have a positive impact on the lives of individuals with epilepsy, focusing on those areas
Epilepsy Leadership Council Member Read More »
Epilepsy Alliance America, founded in 2018, is a growing national organization representing like-minded local, regional, statewide, and even other national agencies dedicated to serving the everyday needs of people who live with seizures and epilepsy every day. DSF is proud to be a nonprofit partner.
Epilepsy Alliance America Read More »
At its most fundamental level, the Clinical Trials Transformation Initiative (CTTI) is a group of individuals and organizations that want to improve the quality and efficiency of clinical trials. It was co-founded by Duke University and the U.S. Food and Drug Administration in 2007 in an effort to identify and address challenges to well-designed, properly
Clinical Trials Transformation Initiative Read More »
The Center for Innovation & Value Research is an independent nonprofit research organization working to make sure that all patients have access to the right care at the right time. Their mission is to advance the science, practice, and use of patient-centered Health Technology Assessment to support decisions that make healthcare more meaningful and equitable.
Center for Innovation & Value Research Read More »
When the Dravet Syndrome Foundation was established in 2009, there were no specific treatments for patients with Dravet syndrome and limited guidelines on best treatment approaches. Despite the known genetic cause for the majority of cases, mutations in SCN1A, the idea of a genetic-based therapy seemed a distant possibility at that time. Things have changed
Genetic Therapy for Dravet Syndrome: 2022 State of the Field Read More »
McCall was born August 28, 2018- perfectly healthy, without any complications. Four of the sweetest months later, still nestled in her car seat at her well check appointment, her arm began to rhythmically bounce up from her lap and fall back down. Her pediatrician immediately, but charily, slipped out of the room to call the
GUEST NAME TABLE # 1 1 2 2 3 3 44 4 5 5 6 6 7 7 8 8 9 9 10 10 11 11 12 12 13 13 14 14 Column 1 Value 15 15 Column 1 Value 16 16 Column 1 Value 17 17 Column 1 Value 18 18 Column 1 Value
Table Assignment by Guest Name Read More »
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