Blog | MPNE

Jul 31, 2022
3 min

14/52 Patients need the best possible research

A common patient advocacy ask is: more research into our condition. While there is an obvious logic to it- we will not progress in areas...

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13/52 The three pillars of effective patient advocacy

Bettina Ryll

Jul 31, 2022
2 min

13/52 The three pillars of effective patient advocacy

When observing what type of expertise and capabilities made patient advocates particularly effective in their work, I found that these...

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12/52 The difference between patients and patient advocates

Bettina Ryll

Jul 30, 2022
4 min

12/52 The difference between patients and patient advocates

There is no universally agreed definition on what a patient advocate is. As the term is not protected- unlike most professional titles-...

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Bettina Ryll

Jul 26, 2022
2 min

11/52 Form follows function. And it always starts with observation....

Work in progress- some recent thinking. 'Arguing things through' is one of the most helpful activities any community can do. And as...

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Bettina Ryll

Jul 23, 2022
6 min

10/52 How to find the resources you need. And why you already have the tool. And it's not a list.

As a community on a mission to improve the chances to survive Melanoma and to minimise the impact of the disease on people and their...

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Bettina Ryll

Jul 16, 2022
5 min

9/52 Zero Melanoma: mission-driven advocacy- the MPNE framework in a nutshell

MPNE, the Melanoma Patient Network Europe, works according to an approach that is similar to the one in mission-driven innovation as...

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Bettina Ryll

Jun 3, 2022
4 min

8/52 Impact over control, better have skin in the game and as long as it works, we take it

Part of the series 'How MPNE works' We have noted that even networks members who have been with us for a long time do not fully...

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Design Thinking for patient partnerships in research

Bettina Ryll

Apr 19, 2022
3 min

Design Thinking for patient partnerships in research

On Monday, 21st March 2022, Gilly and Bettina from MPNE attended the Conference on Civic Engagement in EU Missions. This was a high level...

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Bettina Ryll

Apr 16, 2022
5 min

PRESS RELEASE

iToBoS 1st anniversary EU-funded project aims to create a holistic diagnostic and assessment tool for early detection of melanoma iToBoS...

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Initiative of the European Commission: Supporting Ukraine, neighbouring EU Member States and Moldova

Bettina Ryll

Apr 8, 2022
3 min

Initiative of the European Commission: Supporting Ukraine, neighbouring EU Member States and Moldova

The European Commission has set up a working group Supporting Ukraine, neighbouring EU Member States and Moldova to help coordinate the...

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7/52 Patients' involvement in research- most value for your time, risks and sweet-spots

Bettina Ryll

Mar 27, 2022
5 min

7/52 Patients' involvement in research- most value for your time, risks and sweet-spots

At last weekend's Bootcamp21 in Berlin, we made real progress on mapping a patient-centric research ecosystem, got started on using...

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Bettina Ryll

Mar 4, 2022
4 min

6/52 A starter on Humanitarian Aid

Right now, thousands are fleeing the war in Ukraine, among them cancer patients, including patients with Melanoma. Many of us are...

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5/52 Patient Engagement versus Patients' Engagement in research.

Bettina Ryll

Feb 6, 2022
4 min

5/52 Patient Engagement versus Patients' Engagement in research.

Sometimes one has this feeling that there is something just not quite right with a concept. It's like having a stone in your shoes. Your...

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Bettina Ryll

Feb 5, 2022
3 min

4/52 Papers don't cure patients. Why cancer patient advocates need to care about research policy.

As a cancer patient, you are part of research. Even if you do not participate in a clinical trials or any other form of experimental...

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3/52 Why we don't need patient empowerment. What we need is patient agency. Some thoughts.

Bettina Ryll

Jan 22, 2022
4 min

3/52 Why we don't need patient empowerment. What we need is patient agency. Some thoughts.

'Patient Empowerment' must be one of the buzzwords of the day. As patient advocate it's definitely one of the standard topics one gets...

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2/52 MPNE on access to cross-border healthcare and clinical trials

Bettina Ryll

Jan 20, 2022
3 min

2/52 MPNE on access to cross-border healthcare and clinical trials

We wrote this as submission on 10th February 2021 as feed-back to the EU Roadmap on Cross-border health Summary Under Directive 2011/24,...

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1/52 Patients on a mission. How MPNE actually works.

Bettina Ryll

Jan 9, 2022
3 min

1/52 Patients on a mission. How MPNE actually works.

Finally out: HOW DOES MPNE WORK. MPNE, the Melanoma Patient Network Europe is not a patient organisation in the classic sense of the...

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6/52 To solve a problem, love the problem, not the solution.

Bettina Ryll

Nov 21, 2021
7 min

6/52 To solve a problem, love the problem, not the solution.

Some personal musings on MPNE's 2nd principle: solutions, not problems. Reposted, with an introduction and tiny edits, for the occasion...

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Bettina Ryll

Feb 26, 2019
1 min

Melanoma Term of the Day

Learning about Melanoma can be tricky as texts tend to be riddled with technical terms. The bad news is- they won't go away. The good...

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