We offer a wide range of resources on complex issues that impact all people with chronic conditions. Resources include member-specific services, frequent meetings and events, publications, and comments on rules and legislation.
By Maddie Mason, Senior Associate, Policy Surprise medical bills, which are unexpected medical bills that come after someone with insurance inadvertently receives care from an
Patient Experience Mapping Toolbox Understanding the patient’s journey with disease is critical as it enables understanding the context of the patient experience, the natural history
PFMPD Webinar Series: Rare-Disease Listening Sessions with NORD and the FDA By Aimee Lee Russell, Associate, Programs This blog highlights the first webinar in our
By Katherine Scott, Senior Manager, Member Services and Certifications For more than 50 years, the Epilepsy Foundation has shone a light on epilepsy to promote
By Maddie Mason, Senior Associate, Policy The National Health Council (NHC) submitted comments in response to the Department of Health and Human Services’ (HHS) proposed
Consent Designed For Patients By Patients: A New Consent Standard For Patients Participating In Life-Saving Research Event Time: 2:00 p.m. ET Event Location: Webex This
Observer-reported or Proxy-reported: Is One Better than the Other? Event Location: Webex This webinar featured Laurie Burke, MPH, Founder of the LORA Group, LLC, C.
Statement by Marc M. Boutin, JD, Chief Executive Officer The President’s 2021 budget, released today, aims to greatly slash spending on health programs on which
By Theo Smith, Communications Intern What is the Coronavirus? The coronavirus is a virus identified as the cause of an outbreak of respiratory illness that