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UK<a href="https://www.europesays.com/uk/34490/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.europesays.com/uk/34490/</a> Gene discovery gives dozens of Australian families answers with ReNU syndrome diagnosis <a href="https://pubeurope.com/tags/BigDataInstitute" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#BigDataInstitute</a> <a href="https://pubeurope.com/tags/CentreForPopulationGenomics" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CentreForPopulationGenomics</a> <a href="https://pubeurope.com/tags/disabilities" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#disabilities</a> <a href="https://pubeurope.com/tags/DNASampling" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#DNASampling</a> <a href="https://pubeurope.com/tags/GarvanInstituteOfMedicalResearch" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#GarvanInstituteOfMedicalResearch</a> <a href="https://pubeurope.com/tags/GeneVariant" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#GeneVariant</a> <a href="https://pubeurope.com/tags/GeneticMutation" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#GeneticMutation</a> <a href="https://pubeurope.com/tags/Genetics" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Genetics</a> <a href="https://pubeurope.com/tags/MurdochChildren" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MurdochChildren</a>'sResearchInstitute <a href="https://pubeurope.com/tags/NeurodevelopmentalDisorders" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NeurodevelopmentalDisorders</a> <a href="https://pubeurope.com/tags/OxfordUniversity" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#OxfordUniversity</a> <a href="https://pubeurope.com/tags/RareDiseases" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDiseases</a> <a href="https://pubeurope.com/tags/ReNUSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ReNUSyndrome</a> <a href="https://pubeurope.com/tags/ReNUSyndromeFamilySupportNetwork" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ReNUSyndromeFamilySupportNetwork</a> <a href="https://pubeurope.com/tags/RNU42" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RNU42</a> <a href="https://pubeurope.com/tags/Science" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Science</a> <a href="https://pubeurope.com/tags/SWAN" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#SWAN</a> <a href="https://pubeurope.com/tags/SyndromesWithoutAName" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#SyndromesWithoutAName</a> <a href="https://pubeurope.com/tags/UK" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#UK</a> <a href="https://pubeurope.com/tags/UndiagnosedDisorder" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#UndiagnosedDisorder</a> <a href="https://pubeurope.com/tags/UnitedKingdom" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#UnitedKingdom</a>

Europe Says<a href="https://www.europesays.com/2009861/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.europesays.com/2009861/</a> Gene discovery gives dozens of Australian families answers on ReNU syndrome disability <a href="https://pubeurope.com/tags/australia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#australia</a> <a href="https://pubeurope.com/tags/BigDataInstitute" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#BigDataInstitute</a> <a href="https://pubeurope.com/tags/CentreForPopulationGenomics" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CentreForPopulationGenomics</a> <a href="https://pubeurope.com/tags/disabilities" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#disabilities</a> <a href="https://pubeurope.com/tags/DNASampling" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#DNASampling</a> <a href="https://pubeurope.com/tags/GarvanInstituteOfMedicalResearch" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#GarvanInstituteOfMedicalResearch</a> <a href="https://pubeurope.com/tags/GeneVariant" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#GeneVariant</a> <a href="https://pubeurope.com/tags/GeneticMutation" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#GeneticMutation</a> <a href="https://pubeurope.com/tags/genetics" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#genetics</a> <a href="https://pubeurope.com/tags/MurdochChildren" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MurdochChildren</a>'sResearchInstitute <a href="https://pubeurope.com/tags/NeurodevelopmentalDisorders" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NeurodevelopmentalDisorders</a> <a href="https://pubeurope.com/tags/OxfordUniversity" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#OxfordUniversity</a> <a href="https://pubeurope.com/tags/RareDiseases" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDiseases</a> <a href="https://pubeurope.com/tags/ReNUSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ReNUSyndrome</a> <a href="https://pubeurope.com/tags/ReNUSyndromeFamilySupportNetwork" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ReNUSyndromeFamilySupportNetwork</a> <a href="https://pubeurope.com/tags/RNU42" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RNU42</a> <a href="https://pubeurope.com/tags/swan" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#swan</a> <a href="https://pubeurope.com/tags/SyndromesWithoutAName" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#SyndromesWithoutAName</a> <a href="https://pubeurope.com/tags/UndiagnosedDisorder" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#UndiagnosedDisorder</a>

Verband Angiodysplasie SchweizStell dir vor du könntest morgen das Gras unter deinen Füssen nicht mehr spüren. Dieses Kitzeln, die leichte Feuchte, der Gegendruck der Erde. Das ist mir passiert... <a href="https://swiss.social/tags/angiodysplasie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#angiodysplasie</a> <a href="https://swiss.social/tags/rarediseases" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#rarediseases</a> <a href="https://swiss.social/tags/selten" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#selten</a> <a href="https://swiss.social/tags/schweiz" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#schweiz</a> <a href="https://swiss.social/tags/SelteneErkrankung" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#SelteneErkrankung</a> <a href="https://swiss.social/tags/chronicIllness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#chronicIllness</a> <a href="https://angiodysplasie.ch/zu-mobil-fuer-nottwil/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://angiodysplasie.ch/zu-mobil-fuer-nottwil/</a>

EuractivCzech rare disease care needs improved coordination, patient group warns: Patients with <a href="https://masto.ai/tags/rarediseases" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#rarediseases</a> in the Czech Republic often face a fragmented healthcare system, with high-quality medical care available only for some diagnoses. <a href="https://www.euractiv.com/section/health-consumers/news/czech-rare-disease-care-needs-improved-coordination-patient-group-warns/?utm_source=mastodon&utm_medium=dlvr.it" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.euractiv.com/section/health-consumers/news/czech-rare-disease-care-needs-improved-coordination-patient-group-warns/?utm_source=mastodon&utm_medium=dlvr.it</a>

Verband Angiodysplasie SchweizWir sind neu nun auch assoziiertes Mitglied bei EURORDIS. EURORDIS – Rare Diseases Europe ist ein einzigartiger, gemeinnütziger Zusammenschluss von über 1000 Patientenorganisationen für seltene Krankheiten aus 74 Ländern, die sich gemeinsam für die Verbesserung der Lebensqualität von über 30 Millionen Menschen mit einer seltenen Krankheit in Europa einsetzen. <a href="https://swiss.social/tags/eurordis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#eurordis</a> <a href="https://swiss.social/tags/RareDiseases" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDiseases</a> <a href="https://swiss.social/tags/Schweiz" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Schweiz</a> <a href="https://swiss.social/tags/Europa" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Europa</a> <a href="https://swiss.social/tags/angiodysplasie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#angiodysplasie</a> <a href="https://swiss.social/tags/patient" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#patient</a> <a href="https://swiss.social/tags/SelteneErkrankung" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#SelteneErkrankung</a> <a href="https://www.eurordis.org/who-we-are/our-vision-mission/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.eurordis.org/who-we-are/our-vision-mission/</a>

Verband Angiodysplasie SchweizZum ersten Mal war der Verband Angiodysplasie Schweiz beim "Rare Disease Day" im Luzerner Kantonsspital vertreten – und es mit war eine total bereichernde Erfahrung! 💛 🫂 Ein riesiges Dankeschön an ProRaris für die grossartige Organisation dieser besonderen Veranstaltung. <a href="https://angiodysplasie.ch/unser-erster-tag-der-seltenen-krankheiten-in-luzern/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://angiodysplasie.ch/unser-erster-tag-der-seltenen-krankheiten-in-luzern/</a><a href="https://swiss.social/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#chronicillness</a> <a href="https://swiss.social/tags/RareDiseases" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDiseases</a> <a href="https://swiss.social/tags/SelteneErkrankung" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#SelteneErkrankung</a> <a href="https://swiss.social/tags/rarediseaseday2025" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#rarediseaseday2025</a> <a href="https://swiss.social/tags/angiodysplasie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#angiodysplasie</a> <a href="https://swiss.social/tags/angiodysplasia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#angiodysplasia</a> <a href="https://swiss.social/tags/schweiz" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#schweiz</a> <a href="https://swiss.social/tags/Switzerland" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Switzerland</a> <a href="https://swiss.social/tags/Luzern" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Luzern</a> <a href="https://swiss.social/tags/luks" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#luks</a> <a href="https://swiss.social/tags/ProRaris" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ProRaris</a>

Chronic Illness Humor Funny<a href="https://mastodon.social/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#chronicillness</a> <a href="https://mastodon.social/tags/autoimmune" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#autoimmune</a> <a href="https://mastodon.social/tags/chronicallyill" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#chronicallyill</a> <a href="https://mastodon.social/tags/chronicillnesshumor" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#chronicillnesshumor</a> <a href="https://mastodon.social/tags/chronicillnessmemes" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#chronicillnessmemes</a> <a href="https://mastodon.social/tags/autoimmunememes" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#autoimmunememes</a> <a href="https://mastodon.social/tags/fibromemes" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#fibromemes</a> <a href="https://mastodon.social/tags/fibromyalgia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#fibromyalgia</a> <a href="https://mastodon.social/tags/spoonie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#spoonie</a> <a href="https://mastodon.social/tags/raredisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#raredisease</a> <a href="https://mastodon.social/tags/rarediseases" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#rarediseases</a>

The Xylom⁠Supported by a National Press Foundation Covering Rare Diseases Fellowship, Crystal Chow looked at how Western advances in treating Angelman Syndrome so far haven't trickled down to patients in Hong Kong, and whether increased cross-border integration would provide a solution. (/3)<a href="https://www.thexylom.com/post/a-moonshot-to-cure-angelman-syndrome-is-reachable-where-are-the-people-counting-on-it" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.thexylom.com/post/a-moonshot-to-cure-angelman-syndrome-is-reachable-where-are-the-people-counting-on-it</a><a href="https://journa.host/tags/hongkong" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#hongkong</a> <a href="https://journa.host/tags/health" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#health</a> <a href="https://journa.host/tags/rarediseases" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#rarediseases</a> <a href="https://journa.host/tags/news" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#news</a> <a href="https://journa.host/tags/journalism" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#journalism</a>

Rich Stein (he/him)"A new program at CHEO, eastern Ontario's children's hospital in Ottawa, that harnesses the power of AI may have been able to detect the disease a lot faster. It says it's the first Canadian hospital to use AI to assist in diagnosing rare diseases, and... researchers at CHEO hope there are many more programs like it to come." <a href="https://www.cbc.ca/radio/whitecoat/artificial-intelligence-rare-diseases-diagnose-1.7400073" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.cbc.ca/radio/whitecoat/artificial-intelligence-rare-diseases-diagnose-1.7400073</a> h/t <a href="https://flipboard.com/@cbcnews" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@cbcnews</a> <a href="https://mastodon.social/@hrheingold" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@hrheingold</a> <a href="https://mastodon.hongkongers.net/@cbcbc_mirror/113614157060979842" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://mastodon.hongkongers.net/@cbcbc_mirror/113614157060979842</a> <a href="https://mastodon.social/tags/AI" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#AI</a> <a href="https://mastodon.social/tags/medicine" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#medicine</a> <a href="https://mastodon.social/tags/RareDiseases" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDiseases</a>

Lanie CarmeloHello, caneandable.social! I'm Lanie, a 33-year-old <a href="https://caneandable.social/tags/Christian" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Christian</a> woman from Pipe Creek, TX. I'm <a href="https://caneandable.social/tags/aroace" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#aroace</a>, <a href="https://caneandable.social/tags/TotallyBlind" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#TotallyBlind</a>, <a href="https://caneandable.social/tags/ActuallyAutistic" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ActuallyAutistic</a>, and living with multiple <a href="https://caneandable.social/tags/ChronicIllnesses" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicIllnesses</a>. I've just moved over from tweesecake.social, so I'm excited to meet new people and reconnect with familiar faces!A bit about me: - I live with my mom and stepdad, who are my caregivers - I have a Miniature Pinscher named Squeaker - Currently studying programming on freeCodeCamp.org and codecademy.com and Braille proofreading through the NFB - I work as a usability tester and aspire to become an <a href="https://caneandable.social/tags/accessibility" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#accessibility</a> consultant - My goal is to create a nonprofit for people with multiple <a href="https://caneandable.social/tags/disabilities" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#disabilities</a>My interests include: - <a href="https://caneandable.social/tags/Gaming" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Gaming</a> (especially accessible games like incremental/idle games, word games, puzzles, RPGs, roguelikes, and MUDs) - <a href="https://caneandable.social/tags/Technology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Technology</a> and <a href="https://caneandable.social/tags/Cybersecurity" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Cybersecurity</a> - <a href="https://caneandable.social/tags/RareDiseases" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDiseases</a> and <a href="https://caneandable.social/tags/DisabilityRights" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#DisabilityRights</a> - Reading (sci-fi, fantasy, thrillers, mysteries, and nonfiction) - Swimming - Gardening (planning to start soon!)I'm passionate about <a href="https://caneandable.social/tags/accessibility" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#accessibility</a> and creating a more inclusive digital world. I run online groups for people with multiple disabilities and am active in the <a href="https://caneandable.social/tags/DisabilityCommunity" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#DisabilityCommunity</a>.Some of my <a href="https://caneandable.social/tags/health" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#health</a> conditions include occipital neuralgia, intracranial hypertension, Empty Sella Syndrome, fibromyalgia, hidradenitis suppurativa, GERD, gastroparesis, IBS, sleep apnea, migraines, and non-24-hour sleep-wake disorder.I use various devices to navigate the digital world, including a Windows computer, iPhone, Android tablet, Fire TV, Echo Dot, Apple Watch, wireless headphones, and a Braille display. <a href="https://caneandable.social/tags/AssistiveTechnology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#AssistiveTechnology</a>I'm always eager to connect with others who share similar experiences or interests. Feel free to reach out, especially if you're into <a href="https://caneandable.social/tags/AccessibleTech" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#AccessibleTech</a>, <a href="https://caneandable.social/tags/DisabilityAdvocacy" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#DisabilityAdvocacy</a>, or if you just want to chat about books, games, or life with multiple disabilities!<a href="https://caneandable.social/tags/Introduction" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Introduction</a> <a href="https://caneandable.social/tags/NewHere" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NewHere</a> <a href="https://caneandable.social/tags/BlindMastodon" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#BlindMastodon</a> <a href="https://caneandable.social/tags/AutisticMastodon" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#AutisticMastodon</a> <a href="https://caneandable.social/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicIllness</a> <a href="https://caneandable.social/tags/ProgrammingLearner" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ProgrammingLearner</a> <a href="https://caneandable.social/tags/AccessibilityAdvocate" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#AccessibilityAdvocate</a> <a href="https://caneandable.social/tags/DisabilityRights" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#DisabilityRights</a> <a href="https://caneandable.social/tags/mastodonmigration" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#mastodonmigration</a> <a href="https://caneandable.social/tags/blind" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#blind</a> <a href="https://caneandable.social/tags/autism" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#autism</a> <a href="https://caneandable.social/tags/autistic" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#autistic</a>

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