beige.party

2 posts2 participants0 posts today

Europe Says<a href="https://www.europesays.com/1996886/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.europesays.com/1996886/</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">#Diagnostics</a> <a href="https://pubeurope.com/tags/europe" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#europe</a> <a href="https://pubeurope.com/tags/healthcare" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#healthcare</a> <a href="https://pubeurope.com/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDisease</a> <a href="https://pubeurope.com/tags/research" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#research</a>

poconnorPKU and being 'hangry'. Satiety (feeling full) can be a problem for those with PKU. Here are a few tips for those following a low-protein diet.<a href="https://www.pigpen.page/pku-and-being-hangry/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.pigpen.page/pku-and-being-hangry/</a> <a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithPKU</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/PCU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PCU</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/PKUFood" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PKUFood</a> <a href="https://pkutalk.com/tags/RareDiseaseAwareness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDiseaseAwareness</a> <a href="https://pkutalk.com/tags/Hanger" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Hanger</a> <a href="https://pkutalk.com/tags/Hungry" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Hungry</a>

UK<a href="https://www.europesays.com/uk/9458/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.europesays.com/uk/9458/</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">#allergy</a> <a href="https://pubeurope.com/tags/cardiology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#cardiology</a> <a href="https://pubeurope.com/tags/clinicians" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#clinicians</a> <a href="https://pubeurope.com/tags/dermatology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#dermatology</a> <a href="https://pubeurope.com/tags/diabetes" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#diabetes</a> <a href="https://pubeurope.com/tags/doctors" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#doctors</a> <a href="https://pubeurope.com/tags/Drugs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Drugs</a> <a href="https://pubeurope.com/tags/endocrinology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#endocrinology</a> <a href="https://pubeurope.com/tags/FDA" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#FDA</a> <a href="https://pubeurope.com/tags/gastroenterology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#gastroenterology</a> <a href="https://pubeurope.com/tags/Health" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Health</a> <a href="https://pubeurope.com/tags/Healthcare" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Healthcare</a> <a href="https://pubeurope.com/tags/hematology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#hematology</a> <a href="https://pubeurope.com/tags/InfectiousDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#InfectiousDisease</a> <a href="https://pubeurope.com/tags/insight" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#insight</a> <a href="https://pubeurope.com/tags/InternalMedicine" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#InternalMedicine</a> <a href="https://pubeurope.com/tags/Interviews" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Interviews</a> <a href="https://pubeurope.com/tags/medical" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#medical</a> <a href="https://pubeurope.com/tags/Medication" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Medication</a> <a href="https://pubeurope.com/tags/Medicine" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Medicine</a> <a href="https://pubeurope.com/tags/News" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#News</a> <a href="https://pubeurope.com/tags/ophthalmology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ophthalmology</a> <a href="https://pubeurope.com/tags/Pharmaceuticals" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Pharmaceuticals</a> <a href="https://pubeurope.com/tags/pipeline" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#pipeline</a> <a href="https://pubeurope.com/tags/PrimaryCare" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PrimaryCare</a> <a href="https://pubeurope.com/tags/providers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#providers</a> <a href="https://pubeurope.com/tags/Psychiatry" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Psychiatry</a> <a href="https://pubeurope.com/tags/pulmonology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#pulmonology</a> <a href="https://pubeurope.com/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDisease</a> <a href="https://pubeurope.com/tags/Research" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Research</a> <a href="https://pubeurope.com/tags/rheumatology" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#rheumatology</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/treatments" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#treatments</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/UnitedKingdom" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#UnitedKingdom</a>

Europe Says<a href="https://www.europesays.com/1977912/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.europesays.com/1977912/</a> Catalyst Pharmaceuticals Announces Health Canada’s <a href="https://pubeurope.com/tags/AGAMREE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#AGAMREE</a> <a href="https://pubeurope.com/tags/Canad%C3%A1" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Canadá</a> <a href="https://pubeurope.com/tags/CatalystPharmaceuticals" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CatalystPharmaceuticals</a> <a href="https://pubeurope.com/tags/DMD" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#DMD</a> <a href="https://pubeurope.com/tags/DuchenneMuscularDystrophy" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#DuchenneMuscularDystrophy</a> <a href="https://pubeurope.com/tags/epilepsy" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#epilepsy</a> <a href="https://pubeurope.com/tags/FIRDAPSE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#FIRDAPSE</a> <a href="https://pubeurope.com/tags/FYCOMPA" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#FYCOMPA</a> <a href="https://pubeurope.com/tags/Inc" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Inc</a>. <a href="https://pubeurope.com/tags/LEMS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LEMS</a> <a href="https://pubeurope.com/tags/Nasdaq" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Nasdaq</a>:CPRX <a href="https://pubeurope.com/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDisease</a>

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>

poconnorApril's update is PACKED with:- 🐰 Easter tips,- 🍰 ideas for school holiday baking,- 📋 new brain injury research, - 📝 and a chance to report on the NSPKU conference.Sign up today and be the first to get <a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PKU</a> news, <a href="https://pkutalk.com/tags/low" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#low</a>-protein recipes, mental heatlh tips in your inbox!<a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithPKU</a> <a href="https://pkutalk.com/tags/PCU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PCU</a> <a href="https://pkutalk.com/tags/Phenylketonura" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Phenylketonura</a> <a href="https://pkutalk.com/tags/PKUFood" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PKUFood</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/BrainInjury" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#BrainInjury</a> <a href="https://pkutalk.com/tags/MentalHealth" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MentalHealth</a><a href="https://www.pigpen.page/april-2025/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.pigpen.page/april-2025/</a>

poconnorPKU was discovered in 1934, but was considered untreatable for decades. Then, a team at the Birmingham Children’s Hospital took up the challenge...<a href="https://pkutalk.com/tags/PKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PKU</a> <a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithPKU</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/Birmingham" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Birmingham</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/RareDiseaseAwareness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDiseaseAwareness</a><a href="https://www.pigpen.page/origins-of-pku-treatment/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.pigpen.page/origins-of-pku-treatment/</a>

poconnorWhen you use up all your protein allowance on buttered popcorn…<a href="https://pkutalk.com/tags/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithPKU</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/LowProtein" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LowProtein</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/pcu" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#pcu</a> <a href="https://pkutalk.com/tags/Phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Phenylketonuria</a>

poconnorHoping this might help people: Information on financial support for those in the UK with Inherited Metabolic Disorders (IMDs). Including links to information for support other countries (below article). <a href="https://pkutalk.com/tags/financialSupport" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#financialSupport</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/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDisease</a> <a href="https://pkutalk.com/tags/UK" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#UK</a><a href="https://www.pigpen.page/financial-support/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.pigpen.page/financial-support/</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>

Mark MaguireMetabolic.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">#PKU</a> <a href="https://mastodon.ie/tags/MetabolicDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MetabolicDisease</a> <a href="https://mastodon.ie/tags/RareDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#RareDisease</a> <a href="https://mastodon.ie/tags/PhenylKetoneUrea" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PhenylKetoneUrea</a> <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">https://metabolic.ie/wp-content/uploads/2024/10/PKU-Translations-2.pdf?fbclid=PAZXh0bgNhZW0CMTEAAaY_t7wtD10TVhLdLXlAfPc_qqXAFEs1jRtD1im9hd9_9t4zqvRN8tMiNsc_aem_Ck5Ibj3eyH_SF8VeA5bSXw</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>

poconnorLowest result in over two years!271 <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/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithPKU</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/testing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#testing</a>

Dorothee JanssenEin neues Register einer seltenen Erkrankung. <a href="https://kcnq2.de/das-kcnq2-register-ist-online/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://kcnq2.de/das-kcnq2-register-ist-online/</a> <a href="https://kirche.social/tags/raredisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#raredisease</a> <a href="https://kirche.social/tags/kcnq2" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#kcnq2</a>

MorriganAzure 🧙🏻‍♀️🔮🪄I have a rare kidney condition, <a href="https://turtleisland.social/tags/idiopathic" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#idiopathic</a> <a href="https://turtleisland.social/tags/neprocalcinosis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#neprocalcinosis</a> . Also, <a href="https://turtleisland.social/tags/hypercalciuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#hypercalciuria</a>. This means I have permanent calcifications in my kidneys , and my body excretes too much calcium. Their best guess is it's genetic. This condition is one that a lot of health professionals haven't heard of. I say this not for pity, but to raise awareness of <a href="https://turtleisland.social/tags/ChronicKidneyDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicKidneyDisease</a> . You truly don't realize all your kidneys do for you until they malfunction! <a href="https://turtleisland.social/tags/kidneyhealthmonth" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#kidneyhealthmonth</a> <a href="https://turtleisland.social/tags/raredisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#raredisease</a>

SohebDid a blood test this morning. Added more blood spots as it was starting to get a lil too serious in here 😤🥴😎<a href="https://pkutalk.com/tags/phenylketonuria" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#phenylketonuria</a> <a href="https://pkutalk.com/tags/phenylxetonurie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#phenylxetonurie</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/pcu" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#pcu</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/raredisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#raredisease</a> <a href="https://pkutalk.com/tags/nhs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#nhs</a> <a href="https://pkutalk.com/tags/blood" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#blood</a>

poconnorMonthly phe test day. Been a bit sick lately, and craving the calories. Hoping for a good result in a few daysUntil then, fairy proud of this effort!<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/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithPKU</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/testing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#testing</a>(Edited to add photo 🤦‍♀️)

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>

poconnorI’m one of many living with PKU, a rare disease. Rare Disease Day is observed every year on 28 February (or 29 February in leap years). The day serves as a powerful focal point, driving advocacy efforts at local, national, and international levels.Today, I will be joining an NHS event aimed at raising awareness of rare disease among medical staff.Hope you all have a great day, and let me know what you are up to. <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/LivingWithPKU" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LivingWithPKU</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/rarediseaseday" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#rarediseaseday</a>

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