Our Partners

We are all in this together

The LGS Foundation recognizes that by opening lines of communication, connecting patients, families, researchers, doctors, our fellow advocacy organizations, industry partners, regulators, policymakers, payors, and other community organizations, we can assure resources are leveraged, advancement is rapid, and duplication of efforts is avoided.

The LGS Foundation chooses to partner with like-minded organizations who share our priorities of finding better treatments and cures for LGS, and who share our integrity and values. Through these meaningful collaborations, we can have a much greater impact than working alone.

We welcome partnerships with other organizations that wish to contribute and participate in projects that are in line with our mission and which appeal to each of our supporters.

The quickest way to a cure for a rare disease such as LGS is through global collaboration.

Advocacy organizations, medical partners, industry, or other parties interested in partnering with LGS Foundation should email info@lgsfoundation.org.

Non-Profit and Advocacy Partners

• Chan Zuckerberg Initiative Rare As One Project
• Dravet Syndrome Foundation
• Tuberous Sclerosis Complex Alliance
• DEE-P connections
• Child Neurology Foundation
• Dup15q Alliance
• Epilepsy Alliance America 
• Pediatric Epilepsy Research Consortium (PERC)
• National Organization for Rare Disorders (NORD) 

Coalitions

• Seizure Action Plan Coalition
• Infantile Spasms Action Network
• Rare Epilepsy Network
• Epilepsy Leadership Council
• Global Genes Rare Foundation Alliance
• Partners Against Mortality in Epilepsy (PAME)
• American Brain Coalition

Educational & Awareness Partners

• Neurology Live
• Medscape
• Seizure Tracker
• Epilepsy Awareness Day at Disneyland
• Rare Disease Legislative Advocates (RDLA) 

Government Partners

• National Institute of Neurological Disorders and Stroke (NINDS)
• Food and Drug Administration (FDA)

Academic & Hospital Partners

• American Society for Experimental Neurotherapeutics (ASENT)
• Children’s Hospital of Orange County, USA
• Massachusetts General Hospital, USA
• Melbourne Brain Center, Australia
• Northwestern University, USA
• Pediatric Epilepsy Learning Healthcare System
• Tufts University, USA
• University of Alabama, Birmingham, USA
• University of California, Irvine, USA
• University of California, San Francisco, USA
• University of Texas, Southwestern Medical Center, USA
• University of Washington, USA

Corporate Advisory Council

The Corporate Advisory Council, composed of dedicated individuals from a variety of industries, receives regular updates from the LGS Foundation on progress toward its mission of improving the lives of those impacted by LGS. The Council provides guidance to the LGS Foundation as it seeks to end the devastation and suffering caused by LGS. Council members have no fiduciary responsibility and any advice given is non-binding. We are guided by our Corporate Relations Policy.

• Assertio Management, LLC
• Azurity Pharmaceuticals
• Jazz Pharmaceuticals
• LivaNova
• Longboard Pharmaceuticals, Inc.
• Neurelis Inc.
• SK Life Science
• Takeda Pharmaceuticals America, Inc.
• UCB, Inc.
• Juliane Mills – Senior Director, Therapeutic Strategy Lead, Rare Disease

 

Updated 11/16/2023