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.

Charitable Nonprofit Letter on Urgently Needed COVID Relief

03/02/2021

 At this time of a worldwide pandemic, economic uncertainty, and national turmoil, there can be little doubt that America desperately needs leadership, unity, and aggressive

Long COVID Alliance Recommendations to the NIH

03/01/2021

Dear Director Collins, Principal Deputy Director Tabak, and Deputy Directors Gottesman and Lauer:  As you and your colleagues continue the crucial work of mobilizing resources

Join Us in Raising Awareness for These Causes in March

03/01/2021

Join 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

02/26/2021

More 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”

02/24/2021

Webinar 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

02/23/2021

 The 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

02/22/2021

Have 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

02/18/2021

Patient 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

02/18/2021

Data 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