Epilepsy Foundation Participates in Epilepsy Q&A for Rare Diseases Day
As part of activities to recognize Rare Diseases Day (February 28, 2017), the Epilepsy Foundation's Angela Ostrom (Chief Legal Officer & Vice President of Public Policy) participated in a Q&A with PhRMA that highlights the Foundation's work to improve the lives of people living with rare epilepsies.
More than 7,000 rare diseases impact 30 million Americans - including about a million people living with uncontrolled seizures that are often the result of rare epilepsies. The rare epilepsies community has come together to create the first ever Rare Epilepsy Network (REN), with seed funding from the Patient-Centered Outcomes Research Institute (PCORI). The REN is a patient registry designed to collect information about people living with rare epilepsies to better understand these conditions and inform research into therapies that can improve the lives of people living with rare epilepsies.
Learn more about the challenges that the epilepsy community faces and the opportunities before us as we invest in research and support policies that can unleash the promise of innovation by reading the Q&A here.
Epilepsy Foundation Board Member and Former Congressman Tony Coelho Pens Op-Ed in The Hill
On February 3, 2017, Epilepsy Foundation Board Member and former Congressman Tony Coelho penned an op-ed in The Hill, encouraging President Trump to choose an FDA commissioner with the experience and education necessary to pave the way for future innovation at the FDA. Coelho wrote:
"Having epilepsy myself, I know the U.S. Food and Drug Administration (FDA) plays a critical role in the life and well-being of all Americans. Since serving in the House of Representatives, I have served for many years on the Epilepsy Foundation's Board of Directors and have always been sensitive to the need for innovative treatments that are both safe and effective.
Therefore, I recognize the significance of the administration's choice to nominate for commissioner of FDA, and urge it be someone whose experience will allow for a deep understanding of the community of patients and people with disabilities that rely on the FDA heavily for their health and well-being."
Read the full op-ed here.
Epilepsy Foundation's Angela Ostrom Pens Op-Ed on Epilepsy & Innovation in Morning Consult
On November 11, 2016, Angela Ostrom (Epilepsy Foundation Chief Legal Officer & Vice President of Public Policy) penned an op-ed in Morning Consult to spread awareness about epilepsy and the challenges that the epilepsy community faces. The op-ed anticipated the important debates to come related to the reauthorization of the Prescription Drug User Fee Act (PDUFA) and underscored the significance of this legislation.
"We cannot afford to be complacent when it comes to making new discoveries for patients with epilepsy, especially those who cannot control seizures. Ensuring reauthorization of PDUFA VI in a timely manner is an important step forward. Lawmakers from both parties agree that we're on the cusp of major advancements across the biosciences," Ostrom wrote.
Read the full op-ed here.