Recent Stories

Patient health data: translating stories into science

How can real-world data be captured and shared in ways that marry the needs of patients and researchers?   Patients’ lived experience is increasingly viewed as a valuable datapoint in understanding and addressing unmet health needs....
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Taskforce community is driving meta-framework co-creation

As part of the effort to co-create a meta-framework for patient engagement, PFMD organized 3 workshops with 45 international participants representing patients/ patient organisations, industry (including. CRO and biotech), independent...

Your go-to resource – mapping tool gets user-focused

PFMD’s global mapping and networking platform just got better – turning your information into intelligence. We’ve enhanced the way it gathers data to give you clearer insights into your organisation’s patient engagement...

Getting on the patient engagement map to raise awareness of rare diseases

Today (Tuesday 28 February) marks Rare Disease Day. Mathieu Boudes and Virginie Hivert from PFMD member organisation EURORDIS-Rare Diseases Europe highlight two flagship activities to make sure the voice of rare disease patients is heard....

Children are patients too

Today (Wednesday 15 February) marks International Childhood Cancer Day. PFMD member Sarah Krüg, Executive Director of CANCER101 and former lead of pediatric disease management pathways at Memorial Sloan Kettering Cancer Center reflects on...

Getting on the patient engagement map just got easier!

Just over 10 months ago we launched the PFMD Global Mapping and Networking tool – a dynamic user-populated platform that categorizes and ‘maps’ patient existing initiatives, frameworks and organisations. The goal is to capture...

First public outing for mapping and networking tool

It’s always really exciting to showcase something new and unique for the first time. So we are really thrilled to be taking the PFMD Global Landscape Mapping and Networking Tool on the road at the first ever Patients as Partners event to...

There is a critical mass developing in patient engagement

Kim McCleary Managing Director of FasterCures, a centre of the Milken Institute shares her views on the growing commitment to ensuring better patient engagement in a video filmed at the DIA 2016...

We are moving into a new period of patient emancipation

; PFMD member Roslyn Schneider, Global Patients’ Affairs Lead at Pfizer discusses emerging trends in the development of meaningful patient engagement in a video filmed at the DIA 2016 conference: “The most important trends I see...