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	<title>Events Archives - CureDRPLA</title>
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	<item>
		<title>SAVE THE DATE: DRPLA research update for non-scientists and Q&#038;A session with neurologists, 12 November</title>
		<link>https://curedrpla.org/en/2025/10/02/save-the-date-drpla-research-update-for-non-scientists-and-qa-session-with-neurologists-12-november/</link>
		
		<dc:creator><![CDATA[Silvia Prades]]></dc:creator>
		<pubDate>Thu, 02 Oct 2025 13:39:29 +0000</pubDate>
				<category><![CDATA[Events]]></category>
		<guid isPermaLink="false">https://curedrpla.org/?p=2881</guid>

					<description><![CDATA[<p>In this session, Dr Silvia Prades will update on the findings from the latest research projects. Followed by a Q&#38;A session with Dr Yael Shiloh-Malawsky from the University of North Carolina and Dr Hector Garcia-Moreno from University College London, two neurologists with expertise in DRPLA. This event is tailor-made for individuals with DRPLA, their families [&#8230;]</p>
<p>The post <a href="https://curedrpla.org/en/2025/10/02/save-the-date-drpla-research-update-for-non-scientists-and-qa-session-with-neurologists-12-november/">SAVE THE DATE: DRPLA research update for non-scientists and Q&amp;A session with neurologists, 12 November</a> appeared first on <a href="https://curedrpla.org/en">CureDRPLA</a>.</p>
]]></description>
										<content:encoded><![CDATA[
<p>In this session, Dr Silvia Prades will update on the findings from the latest research projects. Followed by a Q&amp;A session with Dr Yael Shiloh-Malawsky from the University of North Carolina and Dr Hector Garcia-Moreno from University College London, two neurologists with expertise in DRPLA. </p>



<p>This event is tailor-made for individuals with DRPLA, their families and caregivers. Do not miss this opportunity to gain insights, ask questions, and connect with others. </p>



<p><strong>Register <a href="https://us06web.zoom.us/meeting/register/TqsQigI6RlSFIYAX2jsmww">here </a>to receive the meeting link. </strong></p>



<ul>
<li><strong>Date</strong>: Wednesday, November 12</li>



<li><strong>Time</strong>: 9-10:30am PST / 12-1:30pm EST / 5-6:30pm GMT</li>



<li><strong>Location</strong>: Online via Zoom, <a href="https://us06web.zoom.us/meeting/register/TqsQigI6RlSFIYAX2jsmww">free registration is required</a></li>
</ul>
<p>The post <a href="https://curedrpla.org/en/2025/10/02/save-the-date-drpla-research-update-for-non-scientists-and-qa-session-with-neurologists-12-november/">SAVE THE DATE: DRPLA research update for non-scientists and Q&amp;A session with neurologists, 12 November</a> appeared first on <a href="https://curedrpla.org/en">CureDRPLA</a>.</p>
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		<title>Save the date – December 4, DRPLA research update for non-scientists and Q&#038;A with neurologists</title>
		<link>https://curedrpla.org/en/2024/11/21/save-the-date-december-4-drpla-research-update-for-non-scientists-and-qa-with-neurologists/</link>
		
		<dc:creator><![CDATA[Silvia Prades]]></dc:creator>
		<pubDate>Thu, 21 Nov 2024 11:31:21 +0000</pubDate>
				<category><![CDATA[Events]]></category>
		<guid isPermaLink="false">https://curedrpla.org/?p=2713</guid>

					<description><![CDATA[<p>If you want to learn more about our work and the research we’re funding, this session is for you. Our Research Manager, Dr Silvia Prades, will provide an update on our current progress and outline our objectives for the coming years. Including a recap of the research presented at the CureDRPLA Research Conference and ICAR. [&#8230;]</p>
<p>The post <a href="https://curedrpla.org/en/2024/11/21/save-the-date-december-4-drpla-research-update-for-non-scientists-and-qa-with-neurologists/">Save the date – December 4, DRPLA research update for non-scientists and Q&amp;A with neurologists</a> appeared first on <a href="https://curedrpla.org/en">CureDRPLA</a>.</p>
]]></description>
										<content:encoded><![CDATA[
<p>If you want to learn more about our work and the research we’re funding, this session is for you. Our Research Manager, Dr Silvia Prades, will provide an update on our current progress and outline our objectives for the coming years. Including a recap of the research presented at the CureDRPLA Research Conference and ICAR.</p>



<p>Followed by a Q&amp;A session with Dr Yael Shiloh-Malawsky from the University of North Carolina and Dr Hector Garcia-Moreno from University College London, experts in DRPLA.</p>



<p>This event is tailor-made for individuals with DRPLA, their families and caregivers. Don’t miss this opportunity to gain insights, ask questions, and connect with fellow individuals who share similar experiences. Free registration is required to receive the meeting link.</p>



<p>Date: Wednesday, 4th December</p>



<p>Time: 9-10am PST / 12-1pm EST / 5-6pm GMT</p>



<p>Location: Online via Zoom.</p>



<p><a href="https://us06web.zoom.us/meeting/register/tZAqduitqDgsHtN5FFSx3XL5gqqPItJsPrqc">Register here</a> to receive the meeting link.</p>
<p>The post <a href="https://curedrpla.org/en/2024/11/21/save-the-date-december-4-drpla-research-update-for-non-scientists-and-qa-with-neurologists/">Save the date – December 4, DRPLA research update for non-scientists and Q&amp;A with neurologists</a> appeared first on <a href="https://curedrpla.org/en">CureDRPLA</a>.</p>
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		<title>SAVE THE DATE DECEMBER 4 – DRPLA research update for non-scientists and Q&#038;A session with neurologists</title>
		<link>https://curedrpla.org/en/2024/10/11/save-the-date-december-4-drpla-research-update-for-non-scientists-and-qa-session-with-neurologists/</link>
		
		<dc:creator><![CDATA[Silvia Prades]]></dc:creator>
		<pubDate>Fri, 11 Oct 2024 14:14:19 +0000</pubDate>
				<category><![CDATA[Events]]></category>
		<guid isPermaLink="false">https://curedrpla.org/?p=2552</guid>

					<description><![CDATA[<p>In this session, Dr Silvia Prades will give an update on the projects funded by CureDRPLA. Followed by a Q&#38;A session with Dr Yael Shiloh-Malawsky from the University of North Carolina and Dr Hector Garcia-Moreno from University College London, two neurologists with expertise in DRPLA. This event is tailor-made for individuals with DRPLA, their families [&#8230;]</p>
<p>The post <a href="https://curedrpla.org/en/2024/10/11/save-the-date-december-4-drpla-research-update-for-non-scientists-and-qa-session-with-neurologists/">SAVE THE DATE DECEMBER 4 – DRPLA research update for non-scientists and Q&amp;A session with neurologists</a> appeared first on <a href="https://curedrpla.org/en">CureDRPLA</a>.</p>
]]></description>
										<content:encoded><![CDATA[
<p>In this session, Dr Silvia Prades will give an update on the projects funded by CureDRPLA. Followed by a Q&amp;A session with Dr Yael Shiloh-Malawsky from the University of North Carolina and Dr Hector Garcia-Moreno from University College London, two neurologists with expertise in DRPLA. </p>



<p></p>



<p>This event is tailor-made for individuals with DRPLA, their families and caregivers. Don’t miss this opportunity to gain insights, ask questions, and connect with fellow individuals who share similar experiences. Free registration is required to receive the meeting link. </p>



<p></p>



<p><strong>Date</strong>: Wednesday, December 4 </p>



<p><strong>Time</strong>: 9-10am PST / 12-1pm EST / 5-6pm GMT </p>



<p><strong>Location</strong>: Online via Zoom </p>



<p></p>



<p>Register in advance <a href="https://us06web.zoom.us/meeting/register/tZAqduitqDgsHtN5FFSx3XL5gqqPItJsPrqc">here</a>. </p>



<p></p>
<p>The post <a href="https://curedrpla.org/en/2024/10/11/save-the-date-december-4-drpla-research-update-for-non-scientists-and-qa-session-with-neurologists/">SAVE THE DATE DECEMBER 4 – DRPLA research update for non-scientists and Q&amp;A session with neurologists</a> appeared first on <a href="https://curedrpla.org/en">CureDRPLA</a>.</p>
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		<title>Announcing the DRPLA Research Update talk, returning on November 14th!</title>
		<link>https://curedrpla.org/en/2023/07/07/announcing-the-drpla-research-update-talk-returning-on-november-14th/</link>
		
		<dc:creator><![CDATA[Silvia Prades]]></dc:creator>
		<pubDate>Fri, 07 Jul 2023 07:47:31 +0000</pubDate>
				<category><![CDATA[Events]]></category>
		<guid isPermaLink="false">https://curedrpla.org/?p=2140</guid>

					<description><![CDATA[<p>Dr Silvia Prades will give an update on the projects funded by CureDRPLA. Followed by a Q&#38;A session with Dr Yael Shiloh-Malawsky from the University of North Carolina and Dr Hector Garcia-Moreno from University College London, experts in DRPLA. This event is tailor-made for individuals with DRPLA, their families and caregivers. Don&#8217;t miss this opportunity [&#8230;]</p>
<p>The post <a href="https://curedrpla.org/en/2023/07/07/announcing-the-drpla-research-update-talk-returning-on-november-14th/">Announcing the DRPLA Research Update talk, returning on November 14th!</a> appeared first on <a href="https://curedrpla.org/en">CureDRPLA</a>.</p>
]]></description>
										<content:encoded><![CDATA[
<p>Dr Silvia Prades will give an update on the projects funded by CureDRPLA. Followed by a Q&amp;A session with Dr Yael Shiloh-Malawsky from the University of North Carolina and Dr Hector Garcia-Moreno from University College London, experts in DRPLA. This event is tailor-made for individuals with DRPLA, their families and caregivers. Don&#8217;t miss this opportunity to gain insights, ask questions, and connect with fellow individuals who share similar experiences. Make sure to register in advance (it&#8217;s free!) &#8211; <a href="https://bit.ly/DRPLA-14Nov">https://bit.ly/DRPLA-14Nov</a></p>
<p>The post <a href="https://curedrpla.org/en/2023/07/07/announcing-the-drpla-research-update-talk-returning-on-november-14th/">Announcing the DRPLA Research Update talk, returning on November 14th!</a> appeared first on <a href="https://curedrpla.org/en">CureDRPLA</a>.</p>
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		<title>Do you live near Cardiff (UK)? Come and meet us!</title>
		<link>https://curedrpla.org/en/2023/02/10/do-you-live-near-cardiff-uk-come-and-meet-us/</link>
		
		<dc:creator><![CDATA[Silvia Prades]]></dc:creator>
		<pubDate>Fri, 10 Feb 2023 10:01:00 +0000</pubDate>
				<category><![CDATA[Events]]></category>
		<guid isPermaLink="false">https://curedrpla.org/?p=2061</guid>

					<description><![CDATA[<p>Silvia Prades is going to Cardiff with Dr Hector Garcia-Moreno and Ola Volhin, who work at UCL on the DRPLA Natural History and Biomarkers Study. It will be a great opportunity to meet us and also, to get to know other families that are affected by DRPLA.</p>
<p>The post <a href="https://curedrpla.org/en/2023/02/10/do-you-live-near-cardiff-uk-come-and-meet-us/">Do you live near Cardiff (UK)? Come and meet us!</a> appeared first on <a href="https://curedrpla.org/en">CureDRPLA</a>.</p>
]]></description>
										<content:encoded><![CDATA[
<p>Silvia Prades is going to Cardiff with Dr Hector Garcia-Moreno and Ola Volhin, who work at UCL on the DRPLA Natural History and Biomarkers Study. It will be a great opportunity to meet us and also, to get to know other families that are affected by DRPLA. </p>
<p>The post <a href="https://curedrpla.org/en/2023/02/10/do-you-live-near-cardiff-uk-come-and-meet-us/">Do you live near Cardiff (UK)? Come and meet us!</a> appeared first on <a href="https://curedrpla.org/en">CureDRPLA</a>.</p>
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		<title>DRPLA Research Talk and Q&#038;A at the Ataxia UK Virtual Annual Conference</title>
		<link>https://curedrpla.org/en/2022/08/20/drpla-research-talk-and-qa-at-the-ataxia-uk-virtual-annual-conference/</link>
		
		<dc:creator><![CDATA[Silvia Prades]]></dc:creator>
		<pubDate>Sat, 20 Aug 2022 19:00:00 +0000</pubDate>
				<category><![CDATA[Events]]></category>
		<guid isPermaLink="false">https://curedrpla.org/?p=1929</guid>

					<description><![CDATA[<p>Ataxia UK&#8217;s Virtual Annual Conference is taking place on October 7th and 8th, 2022. For the third year in a row, Dr. Silvia Prades will give a DRPLA research update talk, followed by a Q&#38;A session with Dr. Hector Garcia-Moreno. This event will be online and it take place on October 7th at 9 AM [&#8230;]</p>
<p>The post <a href="https://curedrpla.org/en/2022/08/20/drpla-research-talk-and-qa-at-the-ataxia-uk-virtual-annual-conference/">DRPLA Research Talk and Q&#038;A at the Ataxia UK Virtual Annual Conference</a> appeared first on <a href="https://curedrpla.org/en">CureDRPLA</a>.</p>
]]></description>
										<content:encoded><![CDATA[
<p>Ataxia UK&#8217;s Virtual Annual Conference is taking place on October 7th and 8th, 2022. For the third year in a row, <strong>Dr. Silvia Prades will give a DRPLA research update talk, followed by a Q&amp;A session with Dr. Hector Garcia-Moreno</strong>. This event will be online and it take place on <strong>October 7th at 9 AM PDT / 12 PM EDT / 5PM BST / 6PM CEST</strong>. To register for this talk please visit <a href="https://www.ataxia.org.uk/virtual-annual-conference-2022/#conference-tickets" data-type="URL" data-id="https://www.ataxia.org.uk/virtual-annual-conference-2022/#conference-tickets">Ataxia UK&#8217;s conference website</a> to get your ticket. </p>



<p>Dr. Silvia Prades is the DRPLA Research Manager for Ataxia UK and CureDRPLA. She coordinates all the projects that are funded by CureDRPLA and she will tell us all about CureDRPLA&#8217;s latest work. </p>



<p>Dr. Hector Garcia-Moreno is a Clinical Research Associate at University College London (UCL). He is participating in the DRPLA Natural History and Biomarkers Study at UCL and he is the right person to ask any questions about DRPLA. </p>



<p>We <strong>encourage you to send any questions in advance</strong> by emailing Silvia Prades at silvia.prades@curedrpla.org </p>



<p>We hope to see you there!</p>
<p>The post <a href="https://curedrpla.org/en/2022/08/20/drpla-research-talk-and-qa-at-the-ataxia-uk-virtual-annual-conference/">DRPLA Research Talk and Q&#038;A at the Ataxia UK Virtual Annual Conference</a> appeared first on <a href="https://curedrpla.org/en">CureDRPLA</a>.</p>
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		<title>We are improving our website</title>
		<link>https://curedrpla.org/en/2022/05/18/we-are-improving-our-website-3/</link>
		
		<dc:creator><![CDATA[Silvia Prades]]></dc:creator>
		<pubDate>Wed, 18 May 2022 10:30:11 +0000</pubDate>
				<category><![CDATA[Events]]></category>
		<guid isPermaLink="false">https://curedrpla.org/dev/news-and-announc/?p=1863</guid>

					<description><![CDATA[<p>We are launching three new sections on our website: News, Events and Announcements!&#160; Under News we will publish articles about CureDRPLA’s funded research, the latest research that is being published, interviews with researchers and caregivers, and much more.&#160; Under Events we will add dates and times that you should save in your diaries and under&#160;Announcements [&#8230;]</p>
<p>The post <a href="https://curedrpla.org/en/2022/05/18/we-are-improving-our-website-3/">We are improving our website</a> appeared first on <a href="https://curedrpla.org/en">CureDRPLA</a>.</p>
]]></description>
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<p>We are launching three new sections on our website: News, Events and Announcements!&nbsp;</p>



<p>Under News we will publish articles about CureDRPLA’s funded research, the latest research that is being published, interviews with researchers and caregivers, and much more.&nbsp;</p>



<p>Under Events we will add dates and times that you should save in your diaries and under&nbsp;Announcements we will share short news pieces.&nbsp;</p>



<p>We hope these new sections will bring you closer to our work and will help us sustain an engaged community interested in DRPLA.</p>
<p>The post <a href="https://curedrpla.org/en/2022/05/18/we-are-improving-our-website-3/">We are improving our website</a> appeared first on <a href="https://curedrpla.org/en">CureDRPLA</a>.</p>
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		<title>Externally Led-Patient Focused Drug Development Meeting &#8211; September 25, 2020</title>
		<link>https://curedrpla.org/en/2022/04/29/externally-led-patient-focused-drug-development-meeting-september-25-2020/</link>
		
		<dc:creator><![CDATA[Andrea Compton]]></dc:creator>
		<pubDate>Fri, 29 Apr 2022 12:41:56 +0000</pubDate>
				<category><![CDATA[Events]]></category>
		<guid isPermaLink="false">https://curedrpla.org/dev/news-and-announc/?p=1831</guid>

					<description><![CDATA[<p>The post <a href="https://curedrpla.org/en/2022/04/29/externally-led-patient-focused-drug-development-meeting-september-25-2020/">Externally Led-Patient Focused Drug Development Meeting &#8211; September 25, 2020</a> appeared first on <a href="https://curedrpla.org/en">CureDRPLA</a>.</p>
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<p><strong>Access the replay here:</strong></p>
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<iframe title="Externally-Led Patient-Focused Drug Development Meeting on Ataxia" width="1080" height="608" src="https://www.youtube.com/embed/QyqgaNEnug8?feature=oembed"  allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen></iframe>
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<h2><strong>Voice of the Patient Report</strong></h2>
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<p>The Voice of the Patient Report for Polyglutamine Ataxias and DRPLA is now available to&nbsp;<a href="https://curedrpla.org/dev/wp-content/uploads/2021/02/Final_NAF-CureDRPLA-VoP-report.pdf">download.</a>&nbsp;This report summarizes information from the Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting that NAF and CureDRPLA co-hosted on September 25, 2020.</p>
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<p>The Voice of the Patient Report for Polyglutamine Ataxias and DRPLA is a comprehensive document created from the feedback gathered at the September 25, 2020 meeting. It was submitted to the FDA. Future applications for therapy approvals will use the report as a reference when evaluating the effectiveness of the treatment.</p>
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<p>NAF and CureDRPLA would like to offer our thanks to the patient panelists, phone callers, and individuals who submitted email comments. You bravely shared your experiences with symptoms in your daily lives. With your input, we were able to document the significant physical and emotional impact for people living with Ataxia and hopes for future treatments. We heard directly from people living with Ataxia about their struggles with coordination, walking, speech, swallowing, and tremors. This information was included in the Voice of the Patient report and will help key stakeholders understand what people living with Ataxia &amp; DRPLA want from future treatments and clinical trials. It will ensure that the concerns of patients are taken into account.</p>
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<p>We appreciate the efforts of the Ataxia &amp; DRPLA community in making this a successful meeting!</p>
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<div class="wp-block-button"><a class="wp-block-button__link" href="https://curedrpla.org/dev/wp-content/uploads/2021/03/JP2_VoP.pdf">VOICE OF THE PATIENT REPORT (日本語)</a></div>
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<p>The post <a href="https://curedrpla.org/en/2022/04/29/externally-led-patient-focused-drug-development-meeting-september-25-2020/">Externally Led-Patient Focused Drug Development Meeting &#8211; September 25, 2020</a> appeared first on <a href="https://curedrpla.org/en">CureDRPLA</a>.</p>
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