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.
Join Us in Raising Awareness for These Causes in March
03/01/2021Join Us in Raising Awareness for These Causes in March By Deasia Lamar, Communications Intern Patient advocacy organizations work tirelessly to educate, promote, advocate, and
2021 Health Leadership Conference Inspires, Engages Patient Group Leaders
02/26/2021More than 174 attendees patient group and nonprofit Chief Executive Officers, Board leadership, and other key staff gathered virtually for the 2021 Health Leadership Conference on February 10 and 11.
Webinar Summary: Sources of Real-World Data (RWD) – An Introduction to “Big Data”
02/24/2021Webinar Summary: Sources of Real-World Data (RWD) – An Introduction to “Big Data” By Sara Gray, Associate, Programs On Nov. 6, 2020, the National Health Council (NHC) along
Letter Supporting Request to Support Individuals Who Receive Medicaid Home and Community Based Services and the Direct Care Workforce
02/23/2021The undersigned groups write to express our strong support for the provision in the COVID relief reconciliation bill (section 3108) adopted by the House Energy
Case Examples of Patient-Centered Real-World Evidence
02/22/2021Have you been hearing about Real World Data (RWD) and Real-World Evidence (RWE) and wondering what they are or how they might impact patients and care?
Patient Contracting Tools
02/18/2021Patient Contracting Tools Template Agreement between a Patient or Patient Advocacy Organization and a Pharmaceutical Company User Guide Annotated Guide Principles for Contracting between Patients/Patient
Data Capture in Clinical Settings
02/18/2021Data Capture in Clinical Settings Event Time: 12:00 – 12:45 p.m. ET Event Location: Virtual, Zoom Moderator: Gillian Sanders Schmidler, PhD, Deputy Director, Duke-Margolis Center
New Publication! Engaging Patients in Real-World Evidence: An Atrial Fibrillation Patient Advisory Board Case Example
02/18/2021New Publication! Engaging Patients in Real-World Evidence: An Atrial Fibrillation Patient Advisory Board Case Example By Silke Schoch, Manager, Research & Programs Despite substantial interest
Medicare Access for Patients Rx (MAPRx) Coalition Letter On Part D Payment Modernization Model
02/15/2021The Medicare Access for Patients Rx (MAPRx) Coalition is writing in opposition to recent changes, announced on January 19, 2021 under the prior administration, allowing