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.

2020 Health Leadership Conference

2020 Health Leadership Conference Event Date: Feb. 14, 2020 Event Location: Ft. Lauderdale, FL Agenda (download) Sponsorship: Premier: BIO, Eli Lilly, Johnson & Johnson, Mallinckrodt,

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Surprise Medical Billing Update

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

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Patient-Journey Mapping Toolbox

Patient-Journey Mapping Toolbox Understanding the patient’s journey with disease is critical as it enables understanding the context of the patient experience, the natural history of

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PFMPD Webinar Series: Rare-Disease Listening Sessions with NORD and the FDA

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

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Member Spotlight: Epilepsy Foundation

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

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NHC Comments on Transparency in Coverage

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

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Consent Designed For Patients By Patients: A New Consent Standard For Patients Participating In Life-Saving Research

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

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Observer-reported or Proxy-reported: Is One Better than the Other?

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.

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President’s 2021 Budget Proposes Significant Cuts to Health Care

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

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