raredisease hashtag performance
#RareDisease: Exploring the struggles, resilience, and hope surrounding uncommon illnesses. Raising awareness, connecting patients, sharing stories, and fostering community support. Advocating for research and understanding.
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My baby girl is so smart ❤️🙏 #gtube #gtubebaby #preemie #triplets #mom #momlife #medicalmom #raredisease #vacterl #feedingtubeawareness #mickeybutton
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what’s crazy is that the speed isn’t even edited i’m just that slow #disabledtiktoker #braindisease #alsawareness #terminallyill #wheelchairuser #lougherigsdisease #raredisease #disabledlife
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i couldn’t stop laughing editing this video #raredisease #disabledtiktoker #terminallyill #braindisease #alsawareness #wheelchairuser #disabledlife #lougherigsdisease
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not sure how to feel but thank you for the support right now💖 #als #amyotrophiclateralsclerosis #chronicillness #raredisease #neurology #neurologicaldisorder #genetics #slc1a2 #awareness #mystory
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Honestly I’m a little unhinged right now. This one started hurting too soon to be normal. Went back and forth for a while but then ended up pulling it bc it wouldn’t stop. Glad I pulled it when I did 😓 #Subqremo #sickfightsback #invisibleillnessawareness #spoonielife #noteverydiseaseisvisable #chronicillnessawareness #heartfailure #pulmonaryhypertension #chronicillnesswarrior #pulmoaryarterialhypertension #rarediseaseawareness #phighter #MentalHealth #chronicillness #invisibleillness #livingwithph #invisibledisability #invisibledisease #raredisease #phwarrior #livingwithchronicillness #patientleader #patientadvocate #butyoudontlooksick #clincialtrial #pulmonaryhypertensionadvocate #notalldisabilitiesarevisible #chroniccommunity
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In honor of SMAS awareness day here is a repost of my most popular SMAS awareness video💟 VD: Tayler, a young white thin woman with medium length brown hair, signing in ASL to the camera. #superiormesentericarterysyndrome #smas #vascularcompression #raredisease
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SensoryPlay #SensoryToys #SensoryNeeds #SensoryInput #HighSensoryNeeds #SpecialNeedsFamily #AngelmanSyndrome #RareDisease #DisabilityAwareness #SpreadingAwareness #AutismAwareness #AutismMom #NonverbalCommunication #SpecialNeedsMom #FYP #ForYouPage #ViralVideo #ParentingHacks #BigFamilyLife #MomLife #InclusivePlay #TherapyToys #OTApproved #SpecialNeedsParenting #PlayToLearn #childdevelopment
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GRWL (Get Ready With Liv) 💜 #sanfilipposyndrome #specialneedsmom #specialneedsparenting #raredisease #rarebeauty #grwm #grwl
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Cleaning a 2 week old site, wasn’t too bad thanks to the Dupixent. The black stuff def took me by surprise. It hurt like crazy to squeeze and was very tender… not sure what happened to this one. Shortest site I’ve ever had. #P#PAHawarenessC#CHFawarenessI#InvisibleIllnessP#PatientAdvocacyH#HeartHealthL#LungHealthR#RareDiseaseC#ChronicIllnessI#InvisibleDisabilitiesH#HealthcareAdvocacyE#EmpowerPatientsL#LivingWithPAHL#LivingWithCHFS#SupportPAHS#SupportCHFp#pulmonaryarterialhypertensionA#AdvocateForHealthH#HeartFailureWarriorP#PHighterH#HeartandLungHealthp#pulmonaryhypertensionp#pahpulmonaryhypertensionadvocate
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Our Friday night be lit 🔥 #MomsofTikTok #marriedlife #marriagehumor #couple #parentsoftiktok #familytiktok #trend #viral #4u #fyp #disability #medicalmomtok #specialneeds #specialneedsmom #specialneedsmomma #specialneedsmoms #specialneedsparent #specialneedsfamily #raredisease #congenitaldisorderofglycosylation #ALG11 #comedy #reaction #react #surprise #relatable
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i couldn’t take myself seriously #raredisease #alsawareness #lougherigsdisease #disabledlife #terminallyill #braindisease #terminalillness
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An emotional surprise for dad Terry, who created the world's first gene therapy to help save his son and other kids with ultra-rare genetic diseases 💙🥲 #dad #hero #raredisease #storytime #genetherapy
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The best news we could have received. Baby girl does not have Smith Lemli Opitz Syndrome nor does she even carry the gene. So many answered prayers. 🩷 #pregnancy #pregnant #geneticscreening #raredisease #mfm #momofthree #chorionicvillussampling
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don’t worry i got a cheesecake to go #terminallyill #alsawareness #disabledtiktoker #raredisease #braindisease #disabledlife #whatiatefordinner
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Replying to @anzbxhsjsf a life like this makes you appreciate each moment you are given. Diagnosis day is hard, but you pick up and keep living as happily as you can for that’s what life should be about. #dravetsyndrome #fyp #life #Love #diagnosis #awareness #rare #raredisease #epilepsy #medicallycomplex #specialneeds #bseizurefree #nottodaydravet #curedravet #💜 #🦋
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Our Ella girl is such a warrior, everyday she amazes me❤️ please lord watch over my baby 🙏🏼 #ellaslittlesteps #kidneydisease #fyp #warrior #STARsyndrome #ostomyawareness #10secondchallenge #raredisease #surgerytiktok
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Sleep safe bed question answered. I love all the questions, keep them coming! #sanfilipposyndrome #specialneedsmom #specialneedsparenting #raredisease #sleepsafebed #sleepsafety
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We got news from the doctors today & I’m waiting for them to confirm to tell you guys about it❤️ keeps your fingers crossed 🫶🏼 #ellaslittlesteps #kidneydisease #fyp #warrior #STARsyndrome #ostomyawareness #fortoupage #raredisease #surgerytiktok #10secondchallenge #healing #prayer
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if god exists why would he give me this terminal illness and then why would i seek him for help #alsawareness #raredisease #lougherigsdisease #braindisease #terminallyill #disabledtiktoker
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Rare Disease Day is Friday February 28th. Help this disease feel less rare by sharing Liv’s story! I also want to hear about other rare disorders, so please tell us about yours (or your family members) in the comments! #sanfilipposyndrome #specialneedsmom #raredisease #rarediseaseday #rarediseaseawareness
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Check out Liv’s new feeding & activity chair! #sanfilipposyndrome #genetics #fyp #raredisease #specialneeds #specialneedsparenting #disabilityawareness
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