Bettina Ryll Requests for feed-back on anything from information material over surveys to policies and for participation in stakeholder...

'I was recently fortunate to attend DIA Europe 2024. DIA is the Drugs Information Agency and is currently in its 60th year. Drug...

On 31st January- 2nd February 2024, MPNE organised the MPNEconsensus2024 meeting on data, AI and data-dependent business models with the...

8 points to think about when evaluation a translational research proposal

Bettina Ryll Soon it will be autumn, the season of changing leaves- and of grant reviews! And with more and more research funders...

On April 28th-30th 2023, 89 Melanoma patients, carers and patient advocates from 24 countries within and outside the European Union met...

At the moment, patient engagement/ involvement/ participation frameworks are multiplying. While certainly well-intended and at times...

So, you are looking to engage with patients in 2023? The year has barely started but the first requests are coming in. Past experience...

Outcome of MPNEminiMEET2022, Brussels The opportunities for patient engagement currently multiply. While in general a desirable...

Gilly Spurrier, MPNE and Melanome France When my husband was diagnosed with Melanoma in 2008, I had a shocking warning from the local...

There is an ongoing discussion on whether patients were to be engaged or involved in research- or even participate in it. At which stage...

The demand for patient engagement in healthcare decision-making and research increases continuously. Our community has therefore...

MPNE, the Melanoma Patient Network Europe, is a group of volunteers united by the desire to make a difference in Melanoma, rather than by...

MPNE, the Melanoma Patient Network Europe, is a community of volunteers that is united in its determination to make a difference in...

After just posting on the MPNE forum, I realised that I actually never wrote a proper introduction to this blog series of x/52 on how...

It started with a comment by Jean Mossman who was reflecting on her own advocacy experience. That was in 2012, so I do not recall the...

Sometimes one reads what someone else has written and thinks that is *precisely* putting into words what has bugged me for a while and...

Conferences are about connecting and learning, about inspiration and new ideas. Conference sessions obviously play an important part in...

If information is distributed, both information gathering and quality control should equally be distributed. So how does one truthfully...

Work in progress, version 1.0 One of the main reason patients join patient communities is to find trustworthy information on their...