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	<title>Webinar Archives | European Rare Bone Forum</title>
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	<title>Webinar Archives | European Rare Bone Forum</title>
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		<title>Rare Conversations #3 &#8211; Research in Rare Disease</title>
		<link>https://rarebone.org/2021/04/29/rare-conversations-3-forum/</link>
		
		<dc:creator><![CDATA[admin]]></dc:creator>
		<pubDate>Thu, 29 Apr 2021 15:45:50 +0000</pubDate>
				<category><![CDATA[Webinar]]></category>
		<category><![CDATA[Rare Disease Investigation]]></category>
		<category><![CDATA[Research]]></category>
		<guid isPermaLink="false">https://rarebone.org/?p=2045</guid>

					<description><![CDATA[<p>The third episode of Alexion’s Rare Conversations event series, in cooperation with BPI, will be a forum to discuss specificities and needs of research in rare diseases. Indeed, research and development of new treatments in rare and ultra-rare diseases faces its own challenges, due to missing knowledge of the disease, small patient population, difficulties to [&#8230;]</p>
<p>The post <a href="https://rarebone.org/2021/04/29/rare-conversations-3-forum/">Rare Conversations #3 &#8211; Research in Rare Disease</a> appeared first on <a href="https://rarebone.org">European Rare Bone Forum</a>.</p>
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<figure class="wp-block-image size-large"><img fetchpriority="high" decoding="async" width="1024" height="451" src="https://rarebone.org/wp-content/uploads/2021/04/rare_convers30-1024x451.png" alt="" class="wp-image-2037" srcset="https://rarebone.org/wp-content/uploads/2021/04/rare_convers30-1024x451.png 1024w, https://rarebone.org/wp-content/uploads/2021/04/rare_convers30-300x132.png 300w, https://rarebone.org/wp-content/uploads/2021/04/rare_convers30-768x338.png 768w, https://rarebone.org/wp-content/uploads/2021/04/rare_convers30-500x220.png 500w, https://rarebone.org/wp-content/uploads/2021/04/rare_convers30-800x353.png 800w, https://rarebone.org/wp-content/uploads/2021/04/rare_convers30.png 1180w" sizes="(max-width: 1024px) 100vw, 1024px" /></figure>



<p class="wp-block-paragraph">The third episode of <a href="https://alexion.com/" target="_blank" rel="noreferrer noopener">Alexion’s</a> Rare Conversations event series, in cooperation with <a href="https://www.bpi.de/" target="_blank" rel="noreferrer noopener">BPI</a>, will be <strong>a forum to discuss specificities and needs of research in rare diseases</strong>. Indeed, research and development of new treatments in rare and ultra-rare diseases faces its own challenges, due to missing knowledge of the disease, small patient population, difficulties to conduct clinical trials and needs for high investments.</p>



<p class="wp-block-paragraph">This exchange of views will allow to get a full picture on needs and specificities in rare disease research, therefore <strong>defining the necessary steps to undertake to reach further success in this area</strong> <strong>for the benefit of rare disease patients</strong>. Alexion will offer a keynote speech, to present its commitment to research in rare diseases. This will be followed by a panel discussion to understand and share specificities from different stakeholders’ perspective: research institutions, patients, clinicians. The panellists will be able to articulate on their direct experience and outline their view regarding challenges and opportunities in rare disease research. The panel will be followed by a Q&amp;A session with the audience. The event will be wrapped up by BPI.</p>



<p class="wp-block-paragraph">Inês Alves will be speaking at this event, on behalf of <a href="https://rarebone.org/">ERBF</a>.</p>



<p class="wp-block-paragraph">To attend this webinar use this <strong>Registration link</strong>:&nbsp;<a href="https://lnkd.in/dQ7G7vT">https://lnkd.in/dQ7G7vT</a></p>



<p class="wp-block-paragraph">Visit our <a href="https://rarebone.org/news-rare-bone-diseases/events-2">Events Page</a> and find out more about the <a href="https://rarebone.org/about/">European Rare Bone Forum</a></p>
<p>The post <a href="https://rarebone.org/2021/04/29/rare-conversations-3-forum/">Rare Conversations #3 &#8211; Research in Rare Disease</a> appeared first on <a href="https://rarebone.org">European Rare Bone Forum</a>.</p>
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			</item>
		<item>
		<title>Paving new roads in Rare Bone Conditions Research</title>
		<link>https://rarebone.org/2021/02/16/paving-new-roads-in-rare-bone-conditions-research/</link>
		
		<dc:creator><![CDATA[admin]]></dc:creator>
		<pubDate>Tue, 16 Feb 2021 15:57:00 +0000</pubDate>
				<category><![CDATA[Webinar]]></category>
		<category><![CDATA[Events]]></category>
		<category><![CDATA[News]]></category>
		<guid isPermaLink="false">http://rarebone.org/?p=1442</guid>

					<description><![CDATA[<p>On Thursday February 18th, 16h, watch the European Rare Bone Forum Webinar on Rare Bone Conditions Research, with speaker Elvire Gouze (Innoskel Founder &#38; CEO). This event has the support of the European Calcified Tissue Society (ECTS).</p>
<p>The post <a href="https://rarebone.org/2021/02/16/paving-new-roads-in-rare-bone-conditions-research/">Paving new roads in Rare Bone Conditions Research</a> appeared first on <a href="https://rarebone.org">European Rare Bone Forum</a>.</p>
]]></description>
										<content:encoded><![CDATA[
<p class="wp-block-paragraph">On Thursday February 18th, 16h, watch the European Rare Bone Forum Webinar on Rare Bone Conditions Research, with speaker <strong>Elvire Gouze</strong> (Innoskel Founder &amp; CEO).</p>



<figure class="wp-block-image size-large"><img decoding="async" width="1024" height="576" src="https://rarebone.org/wp-content/uploads/2021/03/paving_new_roads_webinar-1024x576.png" alt="" class="wp-image-1428" srcset="https://rarebone.org/wp-content/uploads/2021/03/paving_new_roads_webinar-1024x576.png 1024w, https://rarebone.org/wp-content/uploads/2021/03/paving_new_roads_webinar-300x169.png 300w, https://rarebone.org/wp-content/uploads/2021/03/paving_new_roads_webinar-768x432.png 768w, https://rarebone.org/wp-content/uploads/2021/03/paving_new_roads_webinar.png 1366w" sizes="(max-width: 1024px) 100vw, 1024px" /><figcaption>Paving New Roads &#8211; Webinar</figcaption></figure>



<p class="wp-block-paragraph">This event has the support of the European Calcified Tissue Society (ECTS).</p>
<p>The post <a href="https://rarebone.org/2021/02/16/paving-new-roads-in-rare-bone-conditions-research/">Paving new roads in Rare Bone Conditions Research</a> appeared first on <a href="https://rarebone.org">European Rare Bone Forum</a>.</p>
]]></content:encoded>
					
		
		
			</item>
		<item>
		<title>QoL Studies in Rare Bone Diseases: why, who &#038; how?</title>
		<link>https://rarebone.org/2020/10/27/qol-studies-in-rare-bone-diseases-why-who-how/</link>
		
		<dc:creator><![CDATA[admin]]></dc:creator>
		<pubDate>Tue, 27 Oct 2020 16:07:00 +0000</pubDate>
				<category><![CDATA[Webinar]]></category>
		<category><![CDATA[QoL]]></category>
		<category><![CDATA[Rare Bone Disease]]></category>
		<guid isPermaLink="false">http://rarebone.org/?p=1445</guid>

					<description><![CDATA[<p>Please join us on Thursday October 29, 2020 15h CET. Julia Quitmann (University Medical Center, Hamburg &#8211; Eppendorf) will be our Speaker addressing Quality of Life Studies in Rare Bone Diseases: why, who and how? This Webinar has the support of the European Calcified Tissue Society (ECTS).</p>
<p>The post <a href="https://rarebone.org/2020/10/27/qol-studies-in-rare-bone-diseases-why-who-how/">QoL Studies in Rare Bone Diseases: why, who &#038; how?</a> appeared first on <a href="https://rarebone.org">European Rare Bone Forum</a>.</p>
]]></description>
										<content:encoded><![CDATA[
<p class="wp-block-paragraph">Please join us on Thursday October 29, 2020 15h CET.  Julia Quitmann (University Medical Center, Hamburg &#8211; Eppendorf) will be our Speaker addressing Quality of Life Studies in Rare Bone Diseases: why, who and how?</p>



<figure class="wp-block-image size-large"><img decoding="async" width="1024" height="576" src="https://rarebone.org/wp-content/uploads/2021/03/QoL_webinar-1024x576.png" alt="" class="wp-image-1427" srcset="https://rarebone.org/wp-content/uploads/2021/03/QoL_webinar-1024x576.png 1024w, https://rarebone.org/wp-content/uploads/2021/03/QoL_webinar-300x169.png 300w, https://rarebone.org/wp-content/uploads/2021/03/QoL_webinar-768x432.png 768w, https://rarebone.org/wp-content/uploads/2021/03/QoL_webinar.png 1366w" sizes="(max-width: 1024px) 100vw, 1024px" /><figcaption>QoL Studies in RBD: why, who and how? &#8211; Webinar</figcaption></figure>



<p class="wp-block-paragraph">This Webinar has the support of the European Calcified Tissue Society (ECTS).</p>
<p>The post <a href="https://rarebone.org/2020/10/27/qol-studies-in-rare-bone-diseases-why-who-how/">QoL Studies in Rare Bone Diseases: why, who &#038; how?</a> appeared first on <a href="https://rarebone.org">European Rare Bone Forum</a>.</p>
]]></content:encoded>
					
		
		
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