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234 public initiatives (out of 324 initiatives in total)

Collecting good practice examples in patient engagement was set as a priority in the co-creation working groups organised by PFMD to kick off the framework building process. Patient engagement stakeholders agreed tha...

The Duchenne Regulatory Science Consortium (D-RSC) was set up to support collaborative research and regulatory qualification of new drug development tools (DDTs) for Duchenne muscular dystrophy to enable the earliest pos...

The goal of this initiative by Empowered Patient Coalition is to capture a snapshot of the impact of medical events from the patient’s point of view. This survey is designed to answer questions that are important to pati...

KAC members advocate for legislation and policies that improve the lives of those with kidney disease; raise awareness about kidney health; and advise the organization on further developing NKF’s policy and legislativ...

The National Kidney Foundation includes patients and family members of patients on its Board of Directors. This ensures that the patient voice is incorporated in all decisions and strategy that NKF engages in.

Patients provide their practical experience on how policy considerations directly affect patients and patient care.

The Patient Engagement Quality Guidance (PEQG) started as a mapping exercise by PFMD members to firstly find out what guidance or principles there exist for patient engagement (PE), and secondly to identify the gaps that...

The S.T.A.R. E3 Mobile Engagement App Initiative is an initiative to co-design a mobile engagement app with stakeholders to ensure inclusion and diversity in clinical trials by ensuring the end-users (patients and resear...

The Critical Path to TB Drug Regimens (CPTR) initiative aims to speed the development and impact of new and markedly improved drug regimens and rapid drug-susceptibility tests for tuberculosis. Co-founded by the Bill & M...