Wide Range of resources on complex issues
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.
Patient-Journey Mapping Toolbox
02/21/2020Patient 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
02/20/2020PFMPD 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
Member Spotlight: Epilepsy Foundation
02/18/2020By Katherine Scott, Senior Manager, Member Services and Certifications For more than 50 years, the Epilepsy Foundation has shone a light on epilepsy to promote
NHC Comments on Transparency in Coverage
02/13/2020By 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
02/13/2020Consent 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?
02/11/2020Observer-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.
President’s 2021 Budget Proposes Significant Cuts to Health Care
02/10/2020Statement 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
Coronavirus: Resources, Flu Vaccinations, and More
02/10/2020By Theo Smith, Communications Intern What is the Coronavirus? The coronavirus is a virus identified as the cause of an outbreak of respiratory illness that
A Look at Rare Disease Listening Sessions with NORD and the FDA
02/07/2020A Look at Rare Disease Listening Sessions with NORD and the FDA This webinar featured Debbie Drell, Director of Membership, at the National Organization for