Epilepsy Learning Healthcare System (ELHS)

June 29, 2020

The Dup15q Alliance is proud to be a partner in the Epilepsy Learning Healthcare System (ELHS): https://www.epilepsy.com/make-difference/epilepsy-learning-healthcare-system-elhs

Imagine building a learning health system in which all people – family and community members, clinicians, researchers and health system leaders – work together. They design, implement, and share the results of collaborative research and quality improvement efforts. And this work leads to better health outcomes and increased quality, experience, and value in care. A learning health system approach can dramatically acclerate the ability to generate new knowledge and put it into practice.

In 2018, the Epilepsy Foundation was awarded a PCORNet Learning Health System Network Pilot Collaborative grant to establish an Epilepsy Learning Healthcare System. Read the News Release Here

ELHS Vision

Our vision is for all people with epilepsy to live their highest quality of life, striving for freedom from seizures and side effects, and we won’t stop until we get there.

ELHS Mission

Our mission is to design and implement a system of co-production that will improve outcomes for people with epilepsy and their families/caregivers in the following specific ways:

  • Improve quality of life
  • Improve seizure control
  • Improve seizure freedom

Co-production means that patients, families and health care professionals work together towards similar ends. Patients and families are part of the whole process.

EF Map Final 052320


Related Posts

Purple Day – The Anita Kaufmann Foundation

Purple Day – The Anita Kaufmann Foundation

EPILEPSY AWARENESS 365 DAYS A YEAR Purple (lavender) is the international color representing epilepsy awareness and we want everyone across the world to know. Inspired by Purple Day® – March 26, the international day for epilepsy awareness, we created Purple Day Every...

ICARE Epilepsy Research Portfolio

ICARE Epilepsy Research Portfolio

Dup15q Alliance is proud to be a participant of the The Interagency Collaborative to Advance Research in Epilepsy (ICARE).  ICARE is a voluntary working group of public and non-profit organizations in the United States that provide sustained funding for epilepsy...

THRIVE Initiative

THRIVE Initiative

Dup15q Alliance is proud to be a part of the THRIVE initiative. THRIVE is a collaborative initiative to engage, embrace and drive change in the rare disease community. By acknowledging the need to communicate and lean on the strengths of our allies, brighter futures...