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#RareDisease

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Mark Martino<p>A Trump administration directive aims to cut NIH funding for studies on rare neurological diseases, impacting academic researchers. <a href="https://mastodon.online/tags/NIH" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NIH</span></a> <a href="https://mastodon.online/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>RareDisease</span></a> <a href="https://mastodon.online/tags/Research" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Research</span></a> More: <a href="https://thenextgenbusiness.com/news/nih-funding-cuts-threaten-rare-disease-research/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">thenextgenbusiness.com/news/ni</span><span class="invisible">h-funding-cuts-threaten-rare-disease-research/</span></a></p>
Bytes Europe<p>New DNA mapping technology uncovers genetic clues to rare diseases <a href="https://www.byteseu.com/956192/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="">byteseu.com/956192/</span><span class="invisible"></span></a> <a href="https://pubeurope.com/tags/Blood" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Blood</span></a> <a href="https://pubeurope.com/tags/Children" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Children</span></a> <a href="https://pubeurope.com/tags/dna" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>dna</span></a> <a href="https://pubeurope.com/tags/GENE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>GENE</span></a> <a href="https://pubeurope.com/tags/Genes" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Genes</span></a> <a href="https://pubeurope.com/tags/Genetic" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Genetic</span></a> <a href="https://pubeurope.com/tags/GeneticInformation" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>GeneticInformation</span></a> <a href="https://pubeurope.com/tags/Genome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Genome</span></a> <a href="https://pubeurope.com/tags/Genomic" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Genomic</span></a> <a href="https://pubeurope.com/tags/GenomicImprinting" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>GenomicImprinting</span></a> <a href="https://pubeurope.com/tags/Medicine" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Medicine</span></a> <a href="https://pubeurope.com/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>RareDisease</span></a> <a href="https://pubeurope.com/tags/Research" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Research</span></a> <a href="https://pubeurope.com/tags/Technology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Technology</span></a> <a href="https://pubeurope.com/tags/Villi" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Villi</span></a></p>
Europe Says<p><a href="https://www.europesays.com/2026487/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="">europesays.com/2026487/</span><span class="invisible"></span></a> New DNA mapping technology uncovers genetic clues to rare diseases <a href="https://pubeurope.com/tags/america" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>america</span></a> <a href="https://pubeurope.com/tags/blood" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>blood</span></a> <a href="https://pubeurope.com/tags/children" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>children</span></a> <a href="https://pubeurope.com/tags/DNA" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>DNA</span></a> <a href="https://pubeurope.com/tags/Gene" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Gene</span></a> <a href="https://pubeurope.com/tags/genes" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>genes</span></a> <a href="https://pubeurope.com/tags/Genetic" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Genetic</span></a> <a href="https://pubeurope.com/tags/GeneticInformation" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>GeneticInformation</span></a> <a href="https://pubeurope.com/tags/Genome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Genome</span></a> <a href="https://pubeurope.com/tags/Genomic" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Genomic</span></a> <a href="https://pubeurope.com/tags/GenomicImprinting" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>GenomicImprinting</span></a> <a href="https://pubeurope.com/tags/medicine" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>medicine</span></a> <a href="https://pubeurope.com/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>RareDisease</span></a> <a href="https://pubeurope.com/tags/research" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>research</span></a> <a href="https://pubeurope.com/tags/science" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>science</span></a> <a href="https://pubeurope.com/tags/technology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>technology</span></a> <a href="https://pubeurope.com/tags/UnitedStates" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>UnitedStates</span></a> <a href="https://pubeurope.com/tags/UnitedStatesOfAmerica" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>UnitedStatesOfAmerica</span></a> <a href="https://pubeurope.com/tags/US" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>US</span></a> <a href="https://pubeurope.com/tags/USA" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>USA</span></a> <a href="https://pubeurope.com/tags/Villi" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Villi</span></a></p>
WikiPathways<p>upcoming online workshop, 2x 2 hours, by the ERDERA project, on Rare Disease Maps, May 6 and 7 from 3-5pm CEST: "Rare Disease Maps"</p><p>Day 1: <a href="https://events.teams.microsoft.com/event/009dccd2-5c8f-465e-ad28-15056854f2e4@b89cc6a7-57a7-4137-8224-69e7ea0b1c55" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">events.teams.microsoft.com/eve</span><span class="invisible">nt/009dccd2-5c8f-465e-ad28-15056854f2e4@b89cc6a7-57a7-4137-8224-69e7ea0b1c55</span></a></p><p>Day 2: <a href="https://events.teams.microsoft.com/event/8369a87a-64b3-4822-b2c5-c3cb3ea9a7c7@b89cc6a7-57a7-4137-8224-69e7ea0b1c55" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">events.teams.microsoft.com/eve</span><span class="invisible">nt/8369a87a-64b3-4822-b2c5-c3cb3ea9a7c7@b89cc6a7-57a7-4137-8224-69e7ea0b1c55</span></a></p><p><a href="https://fosstodon.org/tags/bioinformatics" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>bioinformatics</span></a> <a href="https://fosstodon.org/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>RareDisease</span></a></p>
Europe Says<p><a href="https://www.europesays.com/1996886/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="">europesays.com/1996886/</span><span class="invisible"></span></a> The EU Action Plan must step up European-national cooperation <a href="https://pubeurope.com/tags/Diagnostics" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Diagnostics</span></a> <a href="https://pubeurope.com/tags/europe" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>europe</span></a> <a href="https://pubeurope.com/tags/healthcare" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>healthcare</span></a> <a href="https://pubeurope.com/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>RareDisease</span></a> <a href="https://pubeurope.com/tags/research" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>research</span></a></p>
UK<p><a href="https://www.europesays.com/uk/9458/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="">europesays.com/uk/9458/</span><span class="invisible"></span></a> Rapamycin Improves PROMs in Patients With ME/CFS in Early Trial <a href="https://pubeurope.com/tags/allergy" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>allergy</span></a> <a href="https://pubeurope.com/tags/cardiology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>cardiology</span></a> <a href="https://pubeurope.com/tags/clinicians" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>clinicians</span></a> <a href="https://pubeurope.com/tags/dermatology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>dermatology</span></a> <a href="https://pubeurope.com/tags/diabetes" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>diabetes</span></a> <a href="https://pubeurope.com/tags/doctors" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>doctors</span></a> <a href="https://pubeurope.com/tags/Drugs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Drugs</span></a> <a href="https://pubeurope.com/tags/endocrinology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>endocrinology</span></a> <a href="https://pubeurope.com/tags/FDA" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>FDA</span></a> <a href="https://pubeurope.com/tags/gastroenterology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>gastroenterology</span></a> <a href="https://pubeurope.com/tags/Health" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Health</span></a> <a href="https://pubeurope.com/tags/Healthcare" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Healthcare</span></a> <a href="https://pubeurope.com/tags/hematology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>hematology</span></a> <a href="https://pubeurope.com/tags/InfectiousDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>InfectiousDisease</span></a> <a href="https://pubeurope.com/tags/insight" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>insight</span></a> <a href="https://pubeurope.com/tags/InternalMedicine" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>InternalMedicine</span></a> <a href="https://pubeurope.com/tags/Interviews" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Interviews</span></a> <a href="https://pubeurope.com/tags/medical" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>medical</span></a> <a href="https://pubeurope.com/tags/Medication" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Medication</span></a> <a href="https://pubeurope.com/tags/Medicine" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Medicine</span></a> <a href="https://pubeurope.com/tags/News" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>News</span></a> <a href="https://pubeurope.com/tags/ophthalmology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ophthalmology</span></a> <a href="https://pubeurope.com/tags/Pharmaceuticals" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Pharmaceuticals</span></a> <a href="https://pubeurope.com/tags/pipeline" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pipeline</span></a> <a href="https://pubeurope.com/tags/PrimaryCare" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PrimaryCare</span></a> <a href="https://pubeurope.com/tags/providers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>providers</span></a> <a href="https://pubeurope.com/tags/Psychiatry" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Psychiatry</span></a> <a href="https://pubeurope.com/tags/pulmonology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pulmonology</span></a> <a href="https://pubeurope.com/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>RareDisease</span></a> <a href="https://pubeurope.com/tags/Research" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Research</span></a> <a href="https://pubeurope.com/tags/rheumatology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>rheumatology</span></a> <a href="https://pubeurope.com/tags/Science" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Science</span></a> <a href="https://pubeurope.com/tags/treatments" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>treatments</span></a> <a href="https://pubeurope.com/tags/UK" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>UK</span></a> <a href="https://pubeurope.com/tags/UnitedKingdom" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>UnitedKingdom</span></a></p>
Europe Says<p><a href="https://www.europesays.com/1977912/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="">europesays.com/1977912/</span><span class="invisible"></span></a> Catalyst Pharmaceuticals Announces Health Canada’s <a href="https://pubeurope.com/tags/AGAMREE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>AGAMREE</span></a> <a href="https://pubeurope.com/tags/Canad%C3%A1" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Canadá</span></a> <a href="https://pubeurope.com/tags/CatalystPharmaceuticals" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CatalystPharmaceuticals</span></a> <a href="https://pubeurope.com/tags/DMD" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>DMD</span></a> <a href="https://pubeurope.com/tags/DuchenneMuscularDystrophy" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>DuchenneMuscularDystrophy</span></a> <a href="https://pubeurope.com/tags/epilepsy" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>epilepsy</span></a> <a href="https://pubeurope.com/tags/FIRDAPSE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>FIRDAPSE</span></a> <a href="https://pubeurope.com/tags/FYCOMPA" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>FYCOMPA</span></a> <a href="https://pubeurope.com/tags/Inc" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Inc</span></a>. <a href="https://pubeurope.com/tags/LEMS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LEMS</span></a> <a href="https://pubeurope.com/tags/Nasdaq" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Nasdaq</span></a>:CPRX <a href="https://pubeurope.com/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>RareDisease</span></a></p>
Innovative Health Initiative<p>This <a href="https://mastodon.social/tags/WorldHealthDay2025" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>WorldHealthDay2025</span></a>, we are shining the spotlight on two of our projects:<br>🤱 ConcePTION: <a href="https://mastodon.social/tags/MedicineSafety" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MedicineSafety</span></a> while pregnant or breastfeeding<br>👶 Screen4CARE: Rapid <a href="https://mastodon.social/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>RareDisease</span></a> diagnosis through newborn screening<br>👉 <a href="https://europa.eu/!6mjTmB" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="">europa.eu/!6mjTmB</span><span class="invisible"></span></a><br><a href="https://mastodon.social/tags/IHITransformingHealth" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>IHITransformingHealth</span></a> <a href="https://mastodon.social/tags/HopefulFutures" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>HopefulFutures</span></a> <a href="https://mastodon.social/tags/WorldHealthDay" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>WorldHealthDay</span></a></p>
poconnor<p>Spring news for subscribers: <br>🎉new UK patient guides, <br>🏹updates on the NSPKU conference and activity weekend, <br>🔍plus insights into brain injury rehab. </p><p>📖📚Also, my Low Phe ABC book is almost here! </p><p>➡️ Subscribe for more, get a FREE book, &amp; join the conversation. </p><p><a href="https://www.pigpen.page/march-2025/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="">pigpen.page/march-2025/</span><span class="invisible"></span></a> </p><p><a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PKU</span></a> <a href="https://pkutalk.com/tags/Phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Phenylketonuria</span></a> <a href="https://pkutalk.com/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>RareDisease</span></a> <a href="https://pkutalk.com/tags/LowProtein" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LowProtein</span></a> <a href="https://pkutalk.com/tags/BrainInjury" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>BrainInjury</span></a> <a href="https://pkutalk.com/tags/NewBook" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NewBook</span></a></p>
Mark Maguire<p>Metabolic.ie PDF of handy phrases in a few European languages for folks with PKU when we’re travelling out of the anglophone bubble. <a href="https://mastodon.ie/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PKU</span></a> <a href="https://mastodon.ie/tags/MetabolicDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MetabolicDisease</span></a> <a href="https://mastodon.ie/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>RareDisease</span></a> <a href="https://mastodon.ie/tags/PhenylKetoneUrea" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PhenylKetoneUrea</span></a><br><a href="https://metabolic.ie/wp-content/uploads/2024/10/PKU-Translations-2.pdf?fbclid=PAZXh0bgNhZW0CMTEAAaY_t7wtD10TVhLdLXlAfPc_qqXAFEs1jRtD1im9hd9_9t4zqvRN8tMiNsc_aem_Ck5Ibj3eyH_SF8VeA5bSXw" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">metabolic.ie/wp-content/upload</span><span class="invisible">s/2024/10/PKU-Translations-2.pdf?fbclid=PAZXh0bgNhZW0CMTEAAaY_t7wtD10TVhLdLXlAfPc_qqXAFEs1jRtD1im9hd9_9t4zqvRN8tMiNsc_aem_Ck5Ibj3eyH_SF8VeA5bSXw</span></a></p>
Ulrike Walter-Lipow<p>Immer eine schöne Energie mit einem netten &amp; guten Team ein neues Projekt auf den Weg zu bringen. <a href="https://norden.social/tags/MedWriting" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MedWriting</span></a> <a href="https://norden.social/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>RareDisease</span></a></p>
Dorothee Janssen<p>Ein neues Register einer seltenen Erkrankung. <a href="https://kcnq2.de/das-kcnq2-register-ist-online/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">kcnq2.de/das-kcnq2-register-is</span><span class="invisible">t-online/</span></a> <a href="https://kirche.social/tags/raredisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>raredisease</span></a> <a href="https://kirche.social/tags/kcnq2" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>kcnq2</span></a></p>
Healthcare Tech Robot<p>DATE: March 04, 2025 at 06:30AM<br>SOURCE: BioWorld MedTech</p><p>Direct article link at end of text block below.</p><p>UK research effort finds 141 new <a href="https://mastodon.clinicians-exchange.org/tags/raredisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>raredisease</span></a>-<a href="https://mastodon.clinicians-exchange.org/tags/gene" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>gene</span></a> associations</p><p><a href="https://t.co/8KbOC7WPfL" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="">t.co/8KbOC7WPfL</span><span class="invisible"></span></a></p><p><a href="https://mastodon.clinicians-exchange.org/tags/medtech" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>medtech</span></a></p><p>Here are any URLs found in the article text: </p><p><a href="https://t.co/8KbOC7WPfL" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="">t.co/8KbOC7WPfL</span><span class="invisible"></span></a></p><p><a href="https://mastodon.clinicians-exchange.org/tags/medtech" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>medtech</span></a></p><p>Articles can be found by scrolling down the page at <a href="https://www.bioworld.com/topics/85-bioworld-medtech" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">bioworld.com/topics/85-bioworl</span><span class="invisible">d-medtech</span></a> . </p><p>-------------------------------------------------</p><p>Private, vetted email list for mental health professionals: <a href="https://www.clinicians-exchange.org" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="">clinicians-exchange.org</span><span class="invisible"></span></a><br>.<br>NYU Information for Practice puts out 400-500 good quality health-related research posts per week but its too much for many people, so that bot is limited to just subscribers. You can read it or subscribe at <span class="h-card" translate="no"><a href="https://mastodon.clinicians-exchange.org/@PsychResearchBot" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>PsychResearchBot</span></a></span><br>.<br>Since 1991 The National Psychologist has focused on keeping practicing psychologists current with news, information and items of interest. Check them out for more free articles, resources, and subscription information: <a href="https://www.nationalpsychologist.com" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="">nationalpsychologist.com</span><span class="invisible"></span></a><br>.<br>EMAIL DAILY DIGEST OF RSS FEEDS -- SUBSCRIBE:<br><a href="http://subscribe-article-digests.clinicians-exchange.org" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">http://</span><span class="ellipsis">subscribe-article-digests.clin</span><span class="invisible">icians-exchange.org</span></a><br>.<br>READ ONLINE: <a href="http://read-the-rss-mega-archive.clinicians-exchange.org" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">http://</span><span class="ellipsis">read-the-rss-mega-archive.clin</span><span class="invisible">icians-exchange.org</span></a><br>.<br>It's primitive... but it works... mostly...<br>.<br>-------------------------------------------------</p><p><a href="https://mastodon.clinicians-exchange.org/tags/healthcare" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>healthcare</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/healthtech" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>healthtech</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/healthcaretech" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>healthcaretech</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/healthtechnology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>healthtechnology</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/medgadget" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>medgadget</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/medicine" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>medicine</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/doctor" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>doctor</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/hospital" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>hospital</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/medtech" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>medtech</span></a></p>
Healthcare Tech Robot<p>DATE: March 03, 2025 at 05:33PM<br>SOURCE: BioWorld MedTech</p><p>Direct article link at end of text block below.</p><p>UK research effort finds 141 new <a href="https://mastodon.clinicians-exchange.org/tags/raredisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>raredisease</span></a>-<a href="https://mastodon.clinicians-exchange.org/tags/gene" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>gene</span></a> associations</p><p><a href="https://t.co/8KbOC7Xn5j" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="">t.co/8KbOC7Xn5j</span><span class="invisible"></span></a></p><p><a href="https://mastodon.clinicians-exchange.org/tags/medtech" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>medtech</span></a></p><p>Here are any URLs found in the article text: </p><p><a href="https://t.co/8KbOC7Xn5j" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="">t.co/8KbOC7Xn5j</span><span class="invisible"></span></a></p><p><a href="https://mastodon.clinicians-exchange.org/tags/medtech" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>medtech</span></a></p><p>Articles can be found by scrolling down the page at <a href="https://www.bioworld.com/topics/85-bioworld-medtech" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">bioworld.com/topics/85-bioworl</span><span class="invisible">d-medtech</span></a> . </p><p>-------------------------------------------------</p><p>Private, vetted email list for mental health professionals: <a href="https://www.clinicians-exchange.org" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="">clinicians-exchange.org</span><span class="invisible"></span></a><br>.<br>NYU Information for Practice puts out 400-500 good quality health-related research posts per week but its too much for many people, so that bot is limited to just subscribers. You can read it or subscribe at <span class="h-card" translate="no"><a href="https://mastodon.clinicians-exchange.org/@PsychResearchBot" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>PsychResearchBot</span></a></span><br>.<br>Since 1991 The National Psychologist has focused on keeping practicing psychologists current with news, information and items of interest. Check them out for more free articles, resources, and subscription information: <a href="https://www.nationalpsychologist.com" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="">nationalpsychologist.com</span><span class="invisible"></span></a><br>.<br>EMAIL DAILY DIGEST OF RSS FEEDS -- SUBSCRIBE:<br><a href="http://subscribe-article-digests.clinicians-exchange.org" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">http://</span><span class="ellipsis">subscribe-article-digests.clin</span><span class="invisible">icians-exchange.org</span></a><br>.<br>READ ONLINE: <a href="http://read-the-rss-mega-archive.clinicians-exchange.org" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">http://</span><span class="ellipsis">read-the-rss-mega-archive.clin</span><span class="invisible">icians-exchange.org</span></a><br>.<br>It's primitive... but it works... mostly...<br>.<br>-------------------------------------------------</p><p><a href="https://mastodon.clinicians-exchange.org/tags/healthcare" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>healthcare</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/healthtech" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>healthtech</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/healthcaretech" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>healthcaretech</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/healthtechnology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>healthtechnology</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/medgadget" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>medgadget</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/medicine" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>medicine</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/doctor" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>doctor</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/hospital" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>hospital</span></a> <a href="https://mastodon.clinicians-exchange.org/tags/medtech" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>medtech</span></a></p>
Kōtare :tinoflag:<p>So, finally, I would like you to remember your rare friends and loved ones on Feb 28, which is international Rare Diseases Day, and in the campaigns that follow in March, embrace a different vision for healthcare that is not about 'cost saving', and more about life-saving.</p><p>We are all richer when people can live the best life possible, and we don't abandon those with critical illness and disability because it saves a few bucks. It doesn't.</p><p><a href="https://mastodon.nz/tags/RareDiseasesDay" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>RareDiseasesDay</span></a> <a href="https://mastodon.nz/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>RareDisease</span></a></p>
Kōtare :tinoflag:<p>When we talk about rare diseases the word 'rare' can be very misleading. It makes it seem like only a small group of people are affected.</p><p>The reality is quite different.</p><p>NZ has a population of 5 million people. Of those, more than 300,000 have a rare disorder or disease - often undiagnosed. Collectively, that's a larger vulnerable population than those with diabetes.</p><p>Resources for the care of rare, however, are miniscual 1/n</p><p><a href="https://mastodon.nz/tags/RareDiseasesDay" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>RareDiseasesDay</span></a> <a href="https://mastodon.nz/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>RareDisease</span></a> </p><p><a href="https://www.raredisorders.org.nz" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="">raredisorders.org.nz</span><span class="invisible"></span></a></p>
Abishek_Muthian<p>Every year during February my wife's NGO (<a href="https://www.gne-myopathy.org/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="">gne-myopathy.org/</span><span class="invisible"></span></a>) conducts rare diseases awareness program called <a href="https://disabled.social/tags/febrareuary" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>febrareuary</span></a> to coincide with the rare diseases day (last day of Feb).</p><p>This febrareuary we're depicting rare diseases through comics.</p><p>This comic is titled 'Diagnosis'.</p><p>Diagnosing a rare disease can often be a big struggle - taking many years and involving multiple misdiagnoses. </p><p>This is my life story.</p><p><a href="https://disabled.social/tags/disability" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>disability</span></a> <a href="https://disabled.social/tags/raredisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>raredisease</span></a> <a href="https://disabled.social/tags/comics" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>comics</span></a> <a href="https://disabled.social/tags/febrareuary" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>febrareuary</span></a></p>
EmmeMarks<p>The vast majority of physicians know so little about rare disease and are so unable to recognize competency in patients that fully 98% of my interactions with physicians on social media just prove my point. Idk if they're acting in bad faith, using me as a whipping post, or are just that bad but I highly recommend they stop assuming a patient is wrong or uneducated. <a href="https://mastodon.social/tags/medicine" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>medicine</span></a> <a href="https://mastodon.social/tags/raredisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>raredisease</span></a></p>
Bytes Europe<p>Where is the Mental Health Crisis Heading in 2025? Hear from Experts <a href="https://www.byteseu.com/558301/" rel="nofollow noopener noreferrer" target="_blank"><span class="invisible">https://www.</span><span class="">byteseu.com/558301/</span><span class="invisible"></span></a> <a href="https://pubeurope.com/tags/allergy" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>allergy</span></a> <a href="https://pubeurope.com/tags/cardiology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>cardiology</span></a> <a href="https://pubeurope.com/tags/clinicians" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>clinicians</span></a> <a href="https://pubeurope.com/tags/dermatology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>dermatology</span></a> <a href="https://pubeurope.com/tags/diabetes" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>diabetes</span></a> <a href="https://pubeurope.com/tags/doctors" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>doctors</span></a> <a href="https://pubeurope.com/tags/Drugs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Drugs</span></a> <a href="https://pubeurope.com/tags/Endocrinology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Endocrinology</span></a> <a href="https://pubeurope.com/tags/FDA" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>FDA</span></a> <a href="https://pubeurope.com/tags/gastroenterology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>gastroenterology</span></a> <a href="https://pubeurope.com/tags/Health" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Health</span></a> <a href="https://pubeurope.com/tags/Healthcare" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Healthcare</span></a> <a href="https://pubeurope.com/tags/hematology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>hematology</span></a> <a href="https://pubeurope.com/tags/InfectiousDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>InfectiousDisease</span></a> <a href="https://pubeurope.com/tags/insight" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>insight</span></a> <a href="https://pubeurope.com/tags/InternalMedicine" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>InternalMedicine</span></a> <a href="https://pubeurope.com/tags/Interviews" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Interviews</span></a> <a href="https://pubeurope.com/tags/Medical" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Medical</span></a> <a href="https://pubeurope.com/tags/Medicine" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Medicine</span></a> <a href="https://pubeurope.com/tags/News" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>News</span></a> <a href="https://pubeurope.com/tags/ophthalmology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ophthalmology</span></a> <a href="https://pubeurope.com/tags/Pharmaceuticals" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Pharmaceuticals</span></a> <a href="https://pubeurope.com/tags/pipeline" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pipeline</span></a> <a href="https://pubeurope.com/tags/PrimaryCare" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PrimaryCare</span></a> <a href="https://pubeurope.com/tags/providers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>providers</span></a> <a href="https://pubeurope.com/tags/Psychiatry" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Psychiatry</span></a> <a href="https://pubeurope.com/tags/pulmonology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pulmonology</span></a> <a href="https://pubeurope.com/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>RareDisease</span></a> <a href="https://pubeurope.com/tags/Research" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Research</span></a> <a href="https://pubeurope.com/tags/rheumatology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>rheumatology</span></a> <a href="https://pubeurope.com/tags/Science" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Science</span></a> <a href="https://pubeurope.com/tags/treatments" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>treatments</span></a></p>
Healthcare Tech Robot<p>DATE: November 18, 2024 at 08:00AM<br>SOURCE: BioWorld MedTech</p><p>Direct article link at end of text block below.</p><p>Rare disease diagnostics firm 3billion debuts with $10M IPO</p><p><a href="https://t.co/GaSYGKEUaf" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="">t.co/GaSYGKEUaf</span><span class="invisible"></span></a></p><p><a href="https://mastodon.clinicians-exchange.org/tags/medtech" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>medtech</span></a> @3billionrare <a href="https://mastodon.clinicians-exchange.org/tags/raredisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>raredisease</span></a></p><p>Here are any URLs found in the article text: </p><p><a href="https://t.co/GaSYGKEUaf" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="">t.co/GaSYGKEUaf</span><span class="invisible"></span></a></p><p><a href="https://mastodon.clinicians-exchange.org/tags/medtech" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>medtech</span></a></p><p>Articles can be found by scrolling down the page at <a href="https://www.bioworld.com/topics/85-bioworld-medtech" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">bioworld.com/topics/85-bioworl</span><span class="invisible">d-medtech</span></a> . </p><p>-------------------------------------------------</p><p>Private, vetted email list for mental health professionals: <a href="https://www.clinicians-exchange.org" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="">clinicians-exchange.org</span><span class="invisible"></span></a><br>.<br>NYU Information for Practice puts out 400-500 good quality health-related research posts per week but its too much for many people, so that bot is limited to just subscribers. 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