<?xml version="1.0" encoding="UTF-8"?><rss xmlns:dc="http://purl.org/dc/elements/1.1/" xmlns:content="http://purl.org/rss/1.0/modules/content/" xmlns:atom="http://www.w3.org/2005/Atom" version="2.0"><channel><title><![CDATA[MPNE]]></title><description><![CDATA[MPNE]]></description><link>https://www.mpneurope.org/blog</link><generator>RSS for Node</generator><lastBuildDate>Mon, 16 Mar 2026 18:48:41 GMT</lastBuildDate><atom:link href="https://www.mpneurope.org/blog-feed.xml" rel="self" type="application/rss+xml"/><item><title><![CDATA[31/52 A patient consensus process to develop a substantiated position to inform decision-making and policies ]]></title><description><![CDATA[Bettina Ryll Requests for feed-back on anything from information material over surveys to policies and for participation in stakeholder...]]></description><link>https://www.mpneurope.org/post/31-52-a-patient-consensus-process-to-develop-a-substantiated-position-to-inform-decision-making-and</link><guid isPermaLink="false">66ec5f8d47f699a243973bf4</guid><pubDate>Sat, 21 Sep 2024 19:14:58 GMT</pubDate><dc:creator>Bettina Ryll </dc:creator></item><item><title><![CDATA[Rob @DIA Europe 2024]]></title><description><![CDATA['I was recently fortunate to attend DIA Europe 2024. DIA is the Drugs Information Agency and is currently in its 60th year. Drug...]]></description><link>https://www.mpneurope.org/post/rob-dia-europe-2024</link><guid isPermaLink="false">6616d79aa44c246c3e9fd6d5</guid><pubDate>Wed, 10 Apr 2024 18:23:12 GMT</pubDate><dc:creator>Bettina Ryll </dc:creator></item><item><title><![CDATA[MPNEconsensus 2024: a patient consensus on data, AI and data-dependent business models.]]></title><description><![CDATA[On 31st January- 2nd February 2024, MPNE organised the MPNEconsensus2024 meeting on data, AI and data-dependent business models with the...]]></description><link>https://www.mpneurope.org/post/mpneconsensus-2024-a-patient-consensus-on-data-ai-and-data-dependent-business-models</link><guid isPermaLink="false">6605a1721c257abb9c1eaeb7</guid><pubDate>Thu, 28 Mar 2024 17:00:17 GMT</pubDate><dc:creator>Bettina Ryll </dc:creator></item><item><title><![CDATA[30/52 How to evaluate a translational research proposal]]></title><description><![CDATA[8 points to think about when evaluation a translational research proposal ]]></description><link>https://www.mpneurope.org/post/how-to-evaluate-a-translational-research-proposal</link><guid isPermaLink="false">64ee4afe7ef4d858f85ed43b</guid><pubDate>Tue, 29 Aug 2023 22:58:58 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/594c4e_2d279db4a2064d919be3032b74b2c2c8~mv2.jpg/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Bettina Ryll </dc:creator></item><item><title><![CDATA[29/52 How to evaluate patient involvement in a research grant application]]></title><description><![CDATA[Bettina Ryll Soon it will be autumn, the season of  changing leaves- and of grant reviews! And with more and more research funders...]]></description><link>https://www.mpneurope.org/post/29-52-how-to-evaluate-patient-involvement-in-a-research-grant-application</link><guid isPermaLink="false">64d7c2ad73407e59fd08fe65</guid><pubDate>Sat, 12 Aug 2023 19:27:43 GMT</pubDate><dc:creator>Bettina Ryll </dc:creator></item><item><title><![CDATA[MPNE 2023 ]]></title><description><![CDATA[On April 28th-30th 2023, 89 Melanoma patients, carers and patient advocates from 24 countries within and outside the European Union met...]]></description><link>https://www.mpneurope.org/post/mpne-2023</link><guid isPermaLink="false">645bbe8e0c33b9e01af489d2</guid><pubDate>Wed, 10 May 2023 16:30:09 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/594c4e_6a5fe3ddeb844820b9036db5a4a61690~mv2.png/v1/fit/w_872,h_857,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Bettina Ryll </dc:creator></item><item><title><![CDATA[28/52 WHY before HOW- patient involvement in research ]]></title><description><![CDATA[At the moment, patient engagement/ involvement/ participation frameworks are multiplying.  While certainly well-intended and at times...]]></description><link>https://www.mpneurope.org/post/28-52-why-before-how-patient-involvement-in-research</link><guid isPermaLink="false">642679e32545da80ed34e552</guid><pubDate>Fri, 31 Mar 2023 15:20:03 GMT</pubDate><dc:creator>Bettina Ryll </dc:creator></item><item><title><![CDATA[27/52 MPNE patient engagement  1-0-1]]></title><description><![CDATA[So, you are looking to engage with patients in 2023? The year has barely started but the first requests are coming in. Past experience...]]></description><link>https://www.mpneurope.org/post/27-52-mpne-patient-engagement-1-0-1</link><guid isPermaLink="false">63b9245728572d30152a4f51</guid><pubDate>Sat, 07 Jan 2023 09:41:47 GMT</pubDate><dc:creator>Bettina Ryll </dc:creator></item><item><title><![CDATA[26/52 A systematic take on Patient Engagement]]></title><description><![CDATA[Outcome of MPNEminiMEET2022, Brussels The opportunities for patient engagement currently multiply. While in general a desirable...]]></description><link>https://www.mpneurope.org/post/26-52-a-systematic-take-on-patient-engagement</link><guid isPermaLink="false">635299db5d80e5a9f950a0f3</guid><pubDate>Mon, 21 Nov 2022 14:06:18 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/594c4e_452336d44c9b44a2b7596609d769b13d~mv2.png/v1/fit/w_1000,h_872,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Bettina Ryll </dc:creator></item><item><title><![CDATA[Sync not Sink our data – we need more cancer patient agency in health data use.]]></title><description><![CDATA[Gilly Spurrier, MPNE and Melanome France When my husband was diagnosed with Melanoma in 2008, I had a shocking warning from the local...]]></description><link>https://www.mpneurope.org/post/sync-not-sink-our-data-we-need-more-cancer-patient-agency-in-health-data-use</link><guid isPermaLink="false">634125338ed0e9f99e0af9ce</guid><pubDate>Sun, 09 Oct 2022 17:02:42 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/594c4e_1abbf60b7088407f90ebde8840c1065e~mv2.jpg/v1/fit/w_1000,h_693,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>gilliosaspurrier-b</dc:creator></item><item><title><![CDATA[25/52 The 5 reasons to take patients in cancer research seriously]]></title><description><![CDATA[There is an ongoing discussion on whether patients were to be engaged or involved in research- or even participate in it. At which stage...]]></description><link>https://www.mpneurope.org/post/25-52-the-5-reasons-to-take-patients-in-cancer-research-seriously</link><guid isPermaLink="false">6305933c1d291582a4921785</guid><pubDate>Wed, 24 Aug 2022 04:20:49 GMT</pubDate><dc:creator>Bettina Ryll </dc:creator></item><item><title><![CDATA[24/52 Return on Engagement ]]></title><description><![CDATA[The demand for patient engagement in healthcare decision-making and research increases continuously. Our community has therefore...]]></description><link>https://www.mpneurope.org/post/24-52-return-on-engagement</link><guid isPermaLink="false">62fb49134b280e941aa2b4e8</guid><pubDate>Tue, 16 Aug 2022 08:31:04 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/594c4e_45bd3d1514e54f72959823b8c2f3b5f8~mv2.png/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Bettina Ryll </dc:creator></item><item><title><![CDATA[23/52 MPNE principles, a decision-aide  ]]></title><description><![CDATA[MPNE, the Melanoma Patient Network Europe, is a group of volunteers united by the desire to make a difference in Melanoma, rather than by...]]></description><link>https://www.mpneurope.org/post/23-52-mpne-principles-a-decision-aide</link><guid isPermaLink="false">62f8e317df522345a0ef5e1a</guid><pubDate>Sun, 14 Aug 2022 12:23:49 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/594c4e_94e057169ffe4c7899dd254c2aeb04a6~mv2.png/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Bettina Ryll </dc:creator></item><item><title><![CDATA[22/52 MPNE is about making a difference in Melanoma, not about being a patient organisation]]></title><description><![CDATA[MPNE, the Melanoma Patient Network Europe, is a community of volunteers that is united in its determination to make a difference in...]]></description><link>https://www.mpneurope.org/post/22-52-mpne-is-about-making-a-difference-in-melanoma-not-about-being-a-patient-organisation</link><guid isPermaLink="false">62f8db0f751ea62791f11948</guid><pubDate>Sun, 14 Aug 2022 11:49:20 GMT</pubDate><dc:creator>Bettina Ryll </dc:creator></item><item><title><![CDATA[21/52 Why the x/52 blog series: the post that should have come first]]></title><description><![CDATA[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...]]></description><link>https://www.mpneurope.org/post/21-52-why-the-x-52-blog-series-the-post-that-should-have-come-first</link><guid isPermaLink="false">62f8c549e315bff68786d6db</guid><pubDate>Sun, 14 Aug 2022 10:04:54 GMT</pubDate><dc:creator>Bettina Ryll </dc:creator></item><item><title><![CDATA[20/52 Directness and scale of impact]]></title><description><![CDATA[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...]]></description><link>https://www.mpneurope.org/post/20-52-directness-and-scale-of-impact</link><guid isPermaLink="false">62f75695b4a7c2812934a4e6</guid><pubDate>Sat, 13 Aug 2022 11:57:56 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/594c4e_7546c80ded73480f930f6d9fb06a396e~mv2.png/v1/fit/w_1000,h_1000,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Bettina Ryll </dc:creator></item><item><title><![CDATA[19/52 patient involvement: passive, active or consequential?]]></title><description><![CDATA[Sometimes one reads what someone else has written and thinks that is *precisely* putting into words what has bugged me for a while and...]]></description><link>https://www.mpneurope.org/post/19-52-patient-involvement-passive-active-or-consequential</link><guid isPermaLink="false">6267864197104d6734f1dbbd</guid><category><![CDATA[patient advocacy]]></category><pubDate>Fri, 12 Aug 2022 12:25:49 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/594c4e_77fcf0b15cd34cd6b8586fef42ace286~mv2.png/v1/fit/w_765,h_970,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Bettina Ryll </dc:creator></item><item><title><![CDATA[18/52 How to plan a great conference session]]></title><description><![CDATA[Conferences are about connecting and learning, about inspiration and new ideas. Conference sessions obviously play an important part in...]]></description><link>https://www.mpneurope.org/post/18-52-how-to-plan-a-great-conference-session</link><guid isPermaLink="false">62f61d4c6e0de317e2bb154d</guid><pubDate>Fri, 12 Aug 2022 11:43:42 GMT</pubDate><dc:creator>Bettina Ryll </dc:creator></item><item><title><![CDATA[17/52 Knowledge is protection- part 2: keeping patient communities safe from fake news]]></title><description><![CDATA[If information is distributed, both information gathering and quality control should equally be distributed. So how does one truthfully...]]></description><link>https://www.mpneurope.org/post/17-52-knowledge-is-protection-part-2-keeping-patient-communities-safe-from-fake-news</link><guid isPermaLink="false">62f5f322802ddc89abd94058</guid><pubDate>Fri, 12 Aug 2022 08:13:28 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/594c4e_687c5990611b478da2702822c86d3931~mv2.png/v1/fit/w_1000,h_847,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Bettina Ryll </dc:creator></item><item><title><![CDATA[16/52 Knowledge is protection - part 1 ]]></title><description><![CDATA[Work in progress, version 1.0 One of the main reason patients join patient communities is to find trustworthy information on their...]]></description><link>https://www.mpneurope.org/post/16-52-knowledge-is-protection-part-1</link><guid isPermaLink="false">62f227ff4e83c5bcc6113c00</guid><pubDate>Wed, 10 Aug 2022 16:06:51 GMT</pubDate><enclosure url="https://static.wixstatic.com/media/594c4e_14f7e7a6a70d4c01ab59d1efa5ed36fd~mv2.png/v1/fit/w_1000,h_726,al_c,q_80/file.png" length="0" type="image/png"/><dc:creator>Bettina Ryll </dc:creator></item></channel></rss>