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Innovative Health InitiativeThis <a href="https://mastodon.social/tags/WorldHealthDay2025" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#WorldHealthDay2025</a>, we are shining the spotlight on two of our projects: 🤱 ConcePTION: <a href="https://mastodon.social/tags/MedicineSafety" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MedicineSafety</a> while pregnant or breastfeeding 👶 Screen4CARE: Rapid <a href="https://mastodon.social/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDisease</a> diagnosis through newborn screening 👉 <a href="https://europa.eu/!6mjTmB" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://europa.eu/!6mjTmB</a> <a href="https://mastodon.social/tags/IHITransformingHealth" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#IHITransformingHealth</a> <a href="https://mastodon.social/tags/HopefulFutures" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#HopefulFutures</a> <a href="https://mastodon.social/tags/WorldHealthDay" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#WorldHealthDay</a>

poconnorSpring news for subscribers: 🎉new UK patient guides, 🏹updates on the NSPKU conference and activity weekend, 🔍plus insights into brain injury rehab. 📖📚Also, my Low Phe ABC book is almost here! ➡️ Subscribe for more, get a FREE book, & join the conversation. <a href="https://www.pigpen.page/march-2025/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.pigpen.page/march-2025/</a> <a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PKU</a> <a href="https://pkutalk.com/tags/Phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Phenylketonuria</a> <a href="https://pkutalk.com/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDisease</a> <a href="https://pkutalk.com/tags/LowProtein" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LowProtein</a> <a href="https://pkutalk.com/tags/BrainInjury" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#BrainInjury</a> <a href="https://pkutalk.com/tags/NewBook" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NewBook</a>

Ulrike Walter-LipowImmer eine schöne Energie mit einem netten & 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">#MedWriting</a> <a href="https://norden.social/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDisease</a>

Chronic Illness Humor FunnySource: postively_chronic on Insta<a href="https://mastodon.social/tags/rarediseaseday" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#rarediseaseday</a> <a href="https://mastodon.social/tags/rarediseaseday2025" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#rarediseaseday2025</a> <a href="https://mastodon.social/tags/rarediseases" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#rarediseases</a> <a href="https://mastodon.social/tags/raredisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#raredisease</a>

Werner KratzHeute ist der Rare Disease Day, und morgen ist die jährliche Veranstaltung von ProRaris hierzu in Luzern. <a href="https://troet.cafe/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDisease</a> <a href="https://troet.cafe/tags/RareDiseaseDay" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDiseaseDay</a> <a href="https://troet.cafe/tags/rarediseaseday2025" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#rarediseaseday2025</a> <a href="https://troet.cafe/tags/Luzern" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Luzern</a> <a href="https://troet.cafe/tags/Schweiz" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Schweiz</a>

PCU BlogueLe prochain podcast <a href="https://pkutalk.com/tags/PCUBlogueConnect" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PCUBlogueConnect</a> approche! (Et je travaille dessus avec Ubuntu de Linux 🤯😅) The next PCU Blogue Connect podcast is coming! (And I'm working on it with Ubuntu from Linux 🤯😅)<a href="https://pkutalk.com/tags/Phenylcetonurie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Phenylcetonurie</a> <a href="https://pkutalk.com/tags/Phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Phenylketonuria</a> <a href="https://pkutalk.com/tags/PKUawareness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PKUawareness</a> <a href="https://pkutalk.com/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDisease</a> <a href="https://pkutalk.com/tags/Ubuntu" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Ubuntu</a> <a href="https://pkutalk.com/tags/Linux" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Linux</a> <a href="https://pkutalk.com/tags/Kdenlive" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Kdenlive</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>

Kōtare :tinoflag: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.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.<a href="https://mastodon.nz/tags/RareDiseasesDay" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDiseasesDay</a> <a href="https://mastodon.nz/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDisease</a>

Kōtare :tinoflag: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.The reality is quite different.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.Resources for the care of rare, however, are miniscual 1/n<a href="https://mastodon.nz/tags/RareDiseasesDay" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDiseasesDay</a> <a href="https://mastodon.nz/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDisease</a> <a href="https://www.raredisorders.org.nz" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.raredisorders.org.nz</a>

Visions of NapaRare Diseases Day is February 28th.Over 6000 rare diseases are characterized by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease.The long-term cause of the Rare Disease Day campaign is to achieve equitable access to diagnosis, treatment, health and social care and social opportunity for people affected by a rare disease.<a href="https://sfba.social/tags/RareDiseasesDay" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDiseasesDay</a> <a href="https://sfba.social/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDisease</a> <a href="https://sfba.social/tags/HealthcareIsAHumanRight" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#HealthcareIsAHumanRight</a> <a href="https://www.rarediseaseday.org/what-is-a-rare-disease/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.rarediseaseday.org/what-is-a-rare-disease/</a>

Abishek_MuthianEvery year during February my wife's NGO (<a href="https://www.gne-myopathy.org/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.gne-myopathy.org/</a>) conducts rare diseases awareness program called <a href="https://disabled.social/tags/febrareuary" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#febrareuary</a> to coincide with the rare diseases day (last day of Feb).This febrareuary we're depicting rare diseases through comics.This comic is titled 'Diagnosis'.Diagnosing a rare disease can often be a big struggle - taking many years and involving multiple misdiagnoses. This is my life story.<a href="https://disabled.social/tags/disability" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#disability</a> <a href="https://disabled.social/tags/raredisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#raredisease</a> <a href="https://disabled.social/tags/comics" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#comics</a> <a href="https://disabled.social/tags/febrareuary" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#febrareuary</a>

EmmeMarksThe 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">#medicine</a> <a href="https://mastodon.social/tags/raredisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#raredisease</a>

Science UpdatesResearchers want to treat serious neurogenetic diseases during development...<a href="https://mastodon.social/tags/genetics" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#genetics</a> <a href="https://mastodon.social/tags/health" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#health</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/research" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#research</a> <a href="https://mastodon.social/tags/science" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#science</a> <a href="https://mastodon.social/tags/biology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#biology</a> <a href="https://mastodon.social/tags/disease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#disease</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/neuroscience" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#neuroscience</a> <a href="https://www.labroots.com/trending/genetics-and-genomics/27986/gene-therapy-technique-aims-deliver-treatment-birth" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.labroots.com/trending/genetics-and-genomics/27986/gene-therapy-technique-aims-deliver-treatment-birth</a>

HerrTheesFamilienkonferenz <a href="https://wue.social/tags/TaySachs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#TaySachs</a>, <a href="https://wue.social/tags/Sandhoff" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Sandhoff</a> und <a href="https://wue.social/tags/GM1" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#GM1</a> für den deutschsprachigen Raum. Emotionale Achterbahnfahrt, tonnenweise Infos, Austausch von Betroffenen und Familien. Und ich darf Technik machen. <a href="https://tay-sachs-sandhoff.de/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://tay-sachs-sandhoff.de/</a> <a href="https://wue.social/tags/SelteneKrankheiten" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#SelteneKrankheiten</a> <a href="https://wue.social/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDisease</a> <a href="https://wue.social/tags/TaySachsSandhoff" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#TaySachsSandhoff</a> <a href="https://wue.social/tags/Selbsthilfegruppe" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Selbsthilfegruppe</a> <a href="https://wue.social/tags/W%C3%BCrzburg" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Würzburg</a>

BeBoAufruf, bitte boosten: Kennt hier jemand jemanden der <a href="https://ruhr.social/tags/Konzentrationsschw%C3%A4che" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Konzentrationsschwäche</a> durch <a href="https://ruhr.social/tags/Immunsuppression" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Immunsuppression</a> hat? Besonders im Kindesalter? <a href="https://ruhr.social/tags/LebenMitTransplantKid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LebenMitTransplantKid</a> <a href="https://ruhr.social/tags/transplantation" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#transplantation</a> <a href="https://ruhr.social/tags/Immunsuppresiva" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Immunsuppresiva</a> <a href="https://ruhr.social/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDisease</a> <a href="https://ruhr.social/tags/Fedieltern" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Fedieltern</a>

Kōtare :tinoflag:More than 20 years ago, the idea of developing a national health strategy for Rare Disorders in NZ was floated. Five years ago I joined the campaign to make it a reality. Today, Manatū Hauora ( the Ministry of Health) finally published it.This is huge. It will likely not make the media today, but the impact will be felt for decades to come. I'm feeling rather emotional.<a href="https://mastodon.nz/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDisease</a> <a href="https://mastodon.nz/tags/RareDisorders" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDisorders</a> <a href="https://mastodon.nz/tags/Healthcare" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Healthcare</a><a href="https://www.health.govt.nz/publication/aotearoa-new-zealand-rare-disorders-strategy" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.health.govt.nz/publication/aotearoa-new-zealand-rare-disorders-strategy</a>

Kōtare :tinoflag:An application was made on my behalf a few years ago for treatment of my metabolic disorder. I was outwardly well, and treatment would have stopped me ever developing symptoms. It was declined, because I was not sick enough to warrant intervention.Another application was declined a few years later. The reason? My symptoms had progressed to a point treatment would no longer be effective. We have to change the way we provide healthcare. <a href="https://mastodon.nz/tags/rareDisorders" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#rareDisorders</a> <a href="https://mastodon.nz/tags/Healthcare" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Healthcare</a> <a href="https://mastodon.nz/tags/disability" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#disability</a> <a href="https://mastodon.nz/tags/rareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#rareDisease</a>

nemo™ 🇺🇦A mother's journey navigating rare genetic disorders and medical cannabis for her autistic child. Powerful story of resilience and hope 💪🌱🌳<a href="https://mas.to/tags/medicalcannabis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#medicalcannabis</a> <a href="https://www.huffpost.com/entry/child-medical-cannabis-autism-spectrum-disorder_n_664e1156e4b048d73b550708" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.huffpost.com/entry/child-medical-cannabis-autism-spectrum-disorder_n_664e1156e4b048d73b550708</a><a href="https://mas.to/tags/autism" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#autism</a> <a href="https://mas.to/tags/raredisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#raredisease</a> <a href="https://mas.to/tags/motherhood" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#motherhood</a> <a href="https://mas.to/tags/advocacy" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#advocacy</a>

Kevin GlowaczMy son has outgrown the current vial of his medicine, so now instead of $25k a month, the next size up costs $36k a month 💸And he’s still very tiny! The adult doses are 🤯<a href="https://hachyderm.io/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDisease</a> <a href="https://hachyderm.io/tags/medicine" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#medicine</a>

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