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	<title>Sin categoría Archives - Myeloma Patients Europe</title>
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		<title>MPE strengthens patient voice in cancer quality-of-life research at EORTC meeting</title>
		<link>https://www.mpeurope.org/mpe-strengthens-patient-voice-in-cancer-quality-of-life-research-at-eortc-meeting/</link>
					<comments>https://www.mpeurope.org/mpe-strengthens-patient-voice-in-cancer-quality-of-life-research-at-eortc-meeting/#respond</comments>
		
		<dc:creator><![CDATA[Adam Davenport]]></dc:creator>
		<pubDate>Thu, 01 Oct 2026 12:12:29 +0000</pubDate>
				<category><![CDATA[Conferences]]></category>
		<category><![CDATA[MPE]]></category>
		<category><![CDATA[Sin categoría]]></category>
		<guid isPermaLink="false">https://www.mpeurope.org/?p=117213</guid>

					<description><![CDATA[<p>Last week MPE was in Zagreb for the Autumn EORTC Quality of Life Group meeting, connecting with colleagues working to strengthen the role of quality-of-life data in cancer research. The EORTC is the European Organisation for Research and Treatment of Cancer, a cancer research organisation that brings people together to answer important questions about which&#8230;</p>
<p>The post <a href="https://www.mpeurope.org/mpe-strengthens-patient-voice-in-cancer-quality-of-life-research-at-eortc-meeting/">MPE strengthens patient voice in cancer quality-of-life research at EORTC meeting</a> appeared first on <a href="https://www.mpeurope.org">Myeloma Patients Europe</a>.</p>
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									<p dir="ltr">Last week MPE was in Zagreb for the Autumn EORTC Quality of Life Group meeting, connecting with colleagues working to strengthen the role of quality-of-life data in cancer research.</p><p dir="ltr">The <a href="https://www.eortc.org/" target="_blank" rel="noopener">EORTC is the European Organisation for Research and Treatment of Cancer</a>, a cancer research organisation that brings people together to answer important questions about which cancer treatments work best and what their impact is on patients&#8217; lives. The Quality of Life group focuses on measuring and understanding patients&#8217; quality of life in cancer research.</p><p dir="ltr">Ahead of the official meeting, MPE&#8217;s Board Member Vincent Claus contributed to the pilot in-person SISAQOL training course. SISAQOL was a collaborative project that developed recommendations for designing, analysing, presenting and interpreting patient-reported data in cancer clinical trials. MPE was a work package lead on this European Union-funded project. Over the training course, participants learned and discussed how to apply the SISAQOL project recommendations.</p><p dir="ltr">MPE&#8217;s Head of Patient Research, Eilidh Duncan, attended the two-day in-person Quality of Life group meeting and represents MPE on a number of active projects within the group. These projects include the development of measures to capture patients&#8217; experiences of T-cell engaging immunotherapies and to understand the impact of cancer and treatments on finances.</p><p dir="ltr">The meeting and discussions provide an important opportunity to bring the perspectives of the patient community and patient advocates into the group&#8217;s work. It also enables MPE to learn from others and share this learning with our members and community on new developments and best practices in quality of life measurement, analysis and interpretation.</p>								</div>
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		<p>The post <a href="https://www.mpeurope.org/mpe-strengthens-patient-voice-in-cancer-quality-of-life-research-at-eortc-meeting/">MPE strengthens patient voice in cancer quality-of-life research at EORTC meeting</a> appeared first on <a href="https://www.mpeurope.org">Myeloma Patients Europe</a>.</p>
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		<title>Myeloma melodies is back in Paris</title>
		<link>https://www.mpeurope.org/myeloma-melodies-is-back-in-paris/</link>
					<comments>https://www.mpeurope.org/myeloma-melodies-is-back-in-paris/#respond</comments>
		
		<dc:creator><![CDATA[Adam Davenport]]></dc:creator>
		<pubDate>Mon, 07 Sep 2026 13:07:40 +0000</pubDate>
				<category><![CDATA[Myeloma]]></category>
		<category><![CDATA[Sin categoría]]></category>
		<guid isPermaLink="false">https://www.mpeurope.org/?p=116944</guid>

					<description><![CDATA[<p>Myeloma Melodies, an awareness concert for myeloma, returns to Paris on 24 September for an evening of singing, music and fun. The concert is organised by Sarah Tullamore, a professional singer, vocal coach and voice-over artist based in Paris, who is using her voice for a cause close to her heart: raising awareness of myeloma.&#8230;</p>
<p>The post <a href="https://www.mpeurope.org/myeloma-melodies-is-back-in-paris/">Myeloma melodies is back in Paris</a> appeared first on <a href="https://www.mpeurope.org">Myeloma Patients Europe</a>.</p>
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									<h4>Myeloma Melodies, an awareness concert for myeloma, returns to Paris on 24 September for an evening of singing, music and fun.</h4><p>The concert is organised by Sarah Tullamore, a professional singer, vocal coach and voice-over artist based in Paris, who is using her voice for a cause close to her heart: raising awareness of myeloma.</p><p>Advocating for earlier diagnosis is a cause very high on MPE&#8217;s agenda, and mainstream events like this are a great way of engaging with new audiences. Because the symptoms of myeloma are very common it can often be mistaken for other conditions, and patients can wait months to achieve a diagnosis.</p><h4>Where the money goes</h4><p>All funds raised on the night will be shared equally between two organisations working for people affected by myeloma in France:</p><p><span style="background-color: rgba(255, 255, 255, 0); word-spacing: normal;"><a href="https://www.af3m.org/" target="_blank" rel="noopener">AF3M</a></span>, the French myeloma patient association and an <a href="https://www.mpeurope.org/about-mpe/our-members/" target="_blank" rel="noopener">MPE member organisation</a>, which supports patients and families living with myeloma across France and <a href="https://force-hemato.org/" target="_blank" rel="noopener">Force Hémato</a>, a Paris-based endowment fund which finances research into blood diseases, including myeloma.</p><p>Sarah has chosen to split the funds equally so that the evening supports both a specific cause and wider research.</p><h4>Who is performing</h4><p>The line-up features:</p><p><strong>Les Jingle Belles</strong> — Devon Graves, Lexie Kendrick, Lauren Van Kempen and Daniel Arthur<br /><strong>The Sarah Tullamore Jazz Band</strong> — Philippe Petit, Pierre Maingourd, Jean-Michel Davis and Philippe Gobinet<br /><strong>Wendy Taylor</strong><br /><strong>Lexi Rabé</strong><br /><strong>Accordzéâm</strong><br />and <strong>Vincent Heden<br /></strong><br />Event details<br />Date: Thursday 24 September 2026<br />Doors: 19:00 — the concert begins at 19:30<br />Venue: Théâtre de l&#8217;Église Américaine, 65 quai d&#8217;Orsay, 75007 Paris<br />Tickets: €25 (single price) — <a href="https://eur01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.onparticipe.fr%2Fb%2F57IT3jM4&amp;data=05%7C02%7Cdavenport%40mpeurope.org%7Cc6f8c2826ace44a0cda808df02a4978e%7C81a58376bb824b00addc529495083246%7C0%7C0%7C639232581283092992%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C60000%7C%7C%7C&amp;sdata=VV4ORZ0bMuuz53dv%2FEIUlfsdOpao52CmSQUwcCgXgxo%3D&amp;reserved=0" target="_blank" rel="noopener">book here</a><br />Drinks and light refreshments available on the night</p><h4 dir="ltr">Sarah&#8217;s story</h4><p dir="ltr">When Sarah was diagnosed, her myeloma was smoldering, meaning it was asymptomatic. She chose not to tell most of her friends at first.</p><p dir="ltr"><em>&#8220;What was difficult to accept was having preventive treatment while I was asymptomatic. I felt nothing in my body and I had no physical symptoms of the disease, but my blood results were getting worse with every test, and the medical team wanted to prevent the disease from becoming symptomatic.&#8221;</em></p><p dir="ltr">The winter that followed was hard. Sarah tolerated the treatment badly and it had to be readjusted. She is doing much better now, and remains confident about what comes next: <em>&#8220;I tell myself that I am going to come through this, and that my results will keep improving.&#8221;</em></p><p dir="ltr">It was the first Myeloma Melodies concert, in September 2025, that brought her diagnosis into the open.</p><p dir="ltr"><em>&#8220;My illness was brought out into the daylight, and I was relieved in the end to talk to them about it — my family being in England.&#8221;</em></p><p dir="ltr">Her friends in Paris became a source of real support through the difficult months that followed. It is a reminder of something the myeloma community knows well: talking about myeloma with those closest to you can make a profound difference.</p><h4 dir="ltr">From 65 seats to 120</h4><p dir="ltr">The first concert, held on the Péniche Marcounet in aid of AF3M, was such a success that Sarah had to turn people away — the venue held 65 people and it sold out.</p><p dir="ltr"><em>&#8220;Last year was a test. I wanted to see whether the concept worked, and the answer is yes.&#8221;</em></p><p dir="ltr">Her ambition is for the concert to grow year on year, and this year they are back with a bigger venue, which means they can raise more awareness.</p><h4 dir="ltr">What to expect</h4><p dir="ltr">Sarah has planned a programme mixing jazz, musical theatre, soul and perhaps some gypsy folk. <em>&#8220;They are quite different styles, but they work well together. The aim is for the audience to have a very musical and very convivial evening, while allowing me to get an awareness message across to everyone there.&#8221;</em></p><p dir="ltr">During the evening she will again talk about myeloma and about AF3M. The concert also falls during Blood Cancer Awareness Month and just days before European Myeloma Day on 27 September, when the myeloma community across Europe comes together to call for earlier diagnosis.</p><h4>Find out more</h4><p>Follow @myeloma_melodies on Instagram for updates, and <a href="https://www.onparticipe.fr/b/57IT3jM4" target="_blank" rel="noopener">book your tickets here</a>.</p><p>Myeloma Melodies is organised independently by Sarah Tullamore. MPE is sharing details of the event to support our member AF3M and to help raise awareness of myeloma, but is in no way connected to the event. For questions about the concert, please contact the organiser directly, via Instagram.</p>								</div>
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		<p>The post <a href="https://www.mpeurope.org/myeloma-melodies-is-back-in-paris/">Myeloma melodies is back in Paris</a> appeared first on <a href="https://www.mpeurope.org">Myeloma Patients Europe</a>.</p>
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