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		<title>Marche des Maladies Rares 2025 : HPN France – Aplasie médullaire aux côtés de 2 000 participants pour faire bouger les lignes ! &#8211; 06 décembre 2025</title>
		<link>https://hpnfrance.com/2025/12/07/marche-des-maladies-rares-2025-hpn-france-aplasie-medullaire-aux-cotes-de-2-000-participants-pour-faire-bouger-les-lignes/</link>
		
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		<pubDate>Sun, 07 Dec 2025 17:15:54 +0000</pubDate>
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		<category><![CDATA[Alliance maladies rares]]></category>
		<category><![CDATA[Assistance Publique Hôpitaux de Paris (AP-HP)]]></category>
		<category><![CDATA[Association HPN France - Aplasie Médullaire]]></category>
		<category><![CDATA[HPN]]></category>
		<category><![CDATA[Maladies rares]]></category>
		<category><![CDATA[marche des maladies rares]]></category>
		<category><![CDATA[Telethon]]></category>
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					<h2 class="entry-title">Marche des Maladies Rares 2025 : HPN France – Aplasie médullaire aux côtés de 2 000 participants pour faire bouger les lignes ! &#8211; 06 décembre 2025</h2>
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				<div class="et_pb_text_inner"><p>Cette année, <strong>HPN France – Aplasie médullaire</strong> était fièrement représentée par ses membres à la <strong>Marche des Maladies Rares 2025</strong>.<br />Un moment fort, vibrant d’espoir et de solidarité, où <strong>près de 2 000 personnes atteintes de maladies rares, leurs familles et leurs soutiens</strong> se sont rassemblés à Paris pour rendre visible l’invisible.</p>
<p>Du <strong>Jardin du Luxembourg</strong> jusqu’à la <strong>Faculté de Pharmacie</strong>, les 6 kilomètres parcourus ont été bien plus qu’un simple trajet :<br />&#x27a1;&#xfe0f; <strong>6 km de courage</strong><br />&#x27a1;&#xfe0f; <strong>6 km de mobilisation</strong><br />&#x27a1;&#xfe0f; <strong>6 km d’unité pour la recherche et le droit à une vie meilleure</strong></p>
<p>Par chaque pas, chaque sourire échangé, chaque pancarte levée, nous avons rappelé haut et fort que <strong>les maladies rares méritent d’être vues, comprises et soutenues</strong>.<br />Nos membres ont porté les couleurs de notre association, symbolisant la détermination de toutes les personnes touchées par l’<a href="https://hpnfrance.com/lhpn/">HPN</a> et l’<a href="https://hpnfrance.com/laplasie-medullaire/">Aplasie Médullaire Acquise</a>.</p>
<p>Un immense <strong>merci</strong> à toutes celles et ceux qui ont marché avec nous, de près ou de loin.</p>
<p>Ensemble, nous faisons progresser la visibilité, la recherche et l’espoir.</p>
<p style="text-align: center;"><strong>Continuons à avancer, unis, pour vaincre les maladies rares.</strong></p></div>
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				<span class="et_pb_image_wrap "><img loading="lazy" decoding="async" width="1064" height="1" src="/wp-content/uploads/2017/11/liseret.png" alt="" title="" srcset="https://hpnfrance.com/wp-content/uploads/2017/11/liseret.png 1064w, https://hpnfrance.com/wp-content/uploads/2017/11/liseret-150x1.png 150w, https://hpnfrance.com/wp-content/uploads/2017/11/liseret-300x1.png 300w, https://hpnfrance.com/wp-content/uploads/2017/11/liseret-768x1.png 768w, https://hpnfrance.com/wp-content/uploads/2017/11/liseret-1024x1.png 1024w, https://hpnfrance.com/wp-content/uploads/2017/11/liseret-400x1.png 400w, https://hpnfrance.com/wp-content/uploads/2017/11/liseret-510x1.png 510w" sizes="(max-width: 1064px) 100vw, 1064px" class="wp-image-396" /></span>
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				<div class="et_pb_video_box"><iframe loading="lazy" title="HPN France - Aplasie Médullaire à la marche des Maladies Rares 2025" width="563" height="1000" src="https://www.youtube.com/embed/3EVMpBFspXc?feature=oembed"  allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share" referrerpolicy="strict-origin-when-cross-origin" allowfullscreen></iframe></div>
				
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				<div class="et_pb_video_box"><iframe loading="lazy" title="Marches des Maladies Rares 2025 - Hémoglobinurie Paroxystique Nocturne (HPN) et  Aplasie Médullaire" width="1080" height="608" src="https://www.youtube.com/embed/pN1Rh_CCK-o?feature=oembed"  allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share" referrerpolicy="strict-origin-when-cross-origin" allowfullscreen></iframe></div>
				
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				<span class="et_pb_image_wrap "><img loading="lazy" decoding="async" width="1064" height="1" src="/wp-content/uploads/2017/11/liseret.png" alt="" title="" srcset="https://hpnfrance.com/wp-content/uploads/2017/11/liseret.png 1064w, https://hpnfrance.com/wp-content/uploads/2017/11/liseret-150x1.png 150w, https://hpnfrance.com/wp-content/uploads/2017/11/liseret-300x1.png 300w, https://hpnfrance.com/wp-content/uploads/2017/11/liseret-768x1.png 768w, https://hpnfrance.com/wp-content/uploads/2017/11/liseret-1024x1.png 1024w, https://hpnfrance.com/wp-content/uploads/2017/11/liseret-400x1.png 400w, https://hpnfrance.com/wp-content/uploads/2017/11/liseret-510x1.png 510w" sizes="(max-width: 1064px) 100vw, 1064px" class="wp-image-396" /></span>
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				<a class="et_pb_button et_pb_button_0 et_pb_bg_layout_dark" href="https://hpnfrance.com/la-vie-de-lassociation/#don" data-icon="A">Vous pouvez continuer à soutenir la recherche et notre association en cliquant ici.</a>
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				<span class="et_pb_image_wrap "><img loading="lazy" decoding="async" width="1064" height="1" src="/wp-content/uploads/2017/11/liseret.png" alt="" title="" srcset="https://hpnfrance.com/wp-content/uploads/2017/11/liseret.png 1064w, https://hpnfrance.com/wp-content/uploads/2017/11/liseret-150x1.png 150w, https://hpnfrance.com/wp-content/uploads/2017/11/liseret-300x1.png 300w, https://hpnfrance.com/wp-content/uploads/2017/11/liseret-768x1.png 768w, https://hpnfrance.com/wp-content/uploads/2017/11/liseret-1024x1.png 1024w, https://hpnfrance.com/wp-content/uploads/2017/11/liseret-400x1.png 400w, https://hpnfrance.com/wp-content/uploads/2017/11/liseret-510x1.png 510w" sizes="(max-width: 1064px) 100vw, 1064px" class="wp-image-396" /></span>
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				<div class="et_pb_text_inner"><p><span style="color: #e02b02;"><strong>Vous pouvez nous joindre</strong></span></p>
<p style="text-align: center;"><span style="color: #e02b02;"><i class="fa-solid fa-envelope" aria-hidden="true"></i></span> : <a href="mailto:contact@hpnfrance.com" target="_blank" rel="noopener">contact@hpnfrance.com</a></p>
<p style="text-align: center;"><span style="color: #e02b02;"><i class="fa-sharp fa-solid fa-comments" aria-hidden="true"></i>: <a href="https://forum.hpnfrance.com" target="_blank" rel="noopener">forum.hpnfrance.com</a></span></p>
<p style="text-align: center;"><span style="color: #e02b02;"><i class="fa-brands fa-facebook" aria-hidden="true"></i> : <a href="https://fr-fr.facebook.com/HPNFranceAplasieMedullaire/" target="_blank" rel="noopener">facebook.com/HPNFranceAplasieMedullaire</a></span></p>
<p style="text-align: center;"><span style="color: #e02b02;"><i class="fa-brands fa-twitter" aria-hidden="true"></i> : <a href="https://x.com/HPNFranceAM" target="_blank" rel="noopener">x.com/HPNFranceAM</a></span></p>
<p style="text-align: center;"><span style="color: #e02b02;"><i class="fa-brands fa-instagram" aria-hidden="true"></i> : <a href="https://www.instagram.com/hpn_am.fr/" target="_blank" rel="noopener">instagram.com/hpn_am.fr/</a></span></p>
<p style="text-align: center;"><span style="color: #e02b02;"><i class="fa-brands fa-linkedin" aria-hidden="true"></i>: <a href="https://www.linkedin.com/company/association-hpn-france-aplasie-m%C3%A9dullaire/" target="_blank" rel="noopener">linkedin.com/company/association-hpn-france-aplasie-m%C3%A9dullaire/</a></span></p>
<p style="text-align: center;"><span style="color: #e02b02;"><i class="fa-brands fa-square-bluesky" aria-hidden="true"></i>: </span><a href="https://bsky.app/profile/hpnfrance-ami.bsky.social">@hpnfrance-ami.bsky.social</a><span style="color: #e02b02;"> </span></p></div>
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				<span class="et_pb_image_wrap "><img loading="lazy" decoding="async" width="1064" height="1" src="/wp-content/uploads/2017/11/liseret.png" alt="" title="" srcset="https://hpnfrance.com/wp-content/uploads/2017/11/liseret.png 1064w, https://hpnfrance.com/wp-content/uploads/2017/11/liseret-150x1.png 150w, https://hpnfrance.com/wp-content/uploads/2017/11/liseret-300x1.png 300w, https://hpnfrance.com/wp-content/uploads/2017/11/liseret-768x1.png 768w, https://hpnfrance.com/wp-content/uploads/2017/11/liseret-1024x1.png 1024w, https://hpnfrance.com/wp-content/uploads/2017/11/liseret-400x1.png 400w, https://hpnfrance.com/wp-content/uploads/2017/11/liseret-510x1.png 510w" sizes="(max-width: 1064px) 100vw, 1064px" class="wp-image-396" /></span>
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