raredisease hashtag performance
#raredisease unites voices, raising awareness about lesser-known conditions, fostering community support, sharing personal stories, educating others, advocating for research, emphasizing empathy, and promoting understanding of these often-overlooked health challenges.
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Please repost! Spread these girls’ story! #savetiktok #tiktok #fyp #tiktokbanned #sanfilipposyndrome #rarediagnosis #rare #rarebeauty #raredisease
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Ella says hello to all and thanks everyone for the support & prayers 🤍 #fyp #ellaslittlesteps #ostomyawareness #raredisease #urostomy #kidneydisease #fory
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Just had lunch and now it’s nap time ♥️ spending this snow day inside all warm and cozy! Ella’s surgery is still a go for next month pray for no infections 🙏🏼 #ellaslittlesteps #ostomyawareness #raredisease #STARsyndrome #fory #babytok #10secondchallenge #warrior #kidneydisease
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You could say I was ✨shooketh✨ #MomsofTikTok #pregnant #pregnanttiktok #pregnancytest #mals #pots #raredisease #lakenorman #northcarolina #charlottenc #pregnancy
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Replying to @Keazma nope, he was just doing his job. The news would have been shitty regardless where we were and honestly I’m thankful to have a doctor like him on our team. #letmeexplain #raredisease #diagnosis #diagnosisstorytime #doctor #genetics #genes #metabolic #sanfilipposyndrome #sanfilippo #carterschallenge #resentment #medicallycomplex #parenting #momlife
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There are only 4 exit to airways performed each year 😳 I was one of them Also if you’re not hanging out with me on I G yet I encourage you to find me @ audreykandil #mom #rare #raredisease #specialneeds #birth #birthplan #exittoairwaysurgery
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Cleaning a pretty clean site this time around. Could feel the small pocket starting but overall was one of the best ones yet. This was 5+ wks! #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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Here’s to 2025 ✨🫶🏼🥳 We made it. We survived. Whew 😅 We love y’all! 💜 #sanfilipposyndrome #childhooddementia #disabilitytiktok #raredisease #2024
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I go out of my way to choose embarrassing thumbnails just for you! #happynewyear #raredisease #chronicillness #chronicpain #port #powerport #eds #ehlersdanlos #autoimmunedisease
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This week we lost our sweet and spunky little boy. He battled influenza a, pneumonia, and meningitis. It was the most terrifying experience of our lives, as we saw him being hit by a freight train that just wasn’t stopping. January 8 we made the decision to stop care, and Christopher passed peacefully with this entire family and extended family at his bedside. Love you forever. #disabilityparenting #specialneedsmom #raredisease #congenitaldisorderofglycosylation #childloss #childlossgrief
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Be the change you want to see in the world. I hope you grow and heal in ways that you never imagined. Because for me, even in the midst of heartbreak, PTSD and grief, healing is a beautiful thing. Critical thinking, a willingness to listen so that you can learn and empathy are world changing. 🌎 This video clip is from a piece we were fortunate to be a part of while advocating for change alongside other Sanfilippo parents. 💜🫶🏼 #heal #powerfulwomen #disabilitytiktok #sanfilipposyndrome #childhooddementia #raredisease
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Just in time for 2025!!! C-Money is line free!!!! We cannot wait to do all of his favorite things and share all of them with you!!! From our family to yours, happy New Year! May your 2025 will be filled with a lot of love, joy, happiness, health, Carter, Vlogs, and memories, of course ❤️ we love you! #carterschallenge #raredisease #genetics #chronicpancreatitis #pancreatitis #piccline #tpn #lipids #liquidnutrition #educational #advocate #medicallycomplex #sanfilipposyndrome #sahm #caregiver #parenting #disabilityparenting #themoreyouknow #LearnOnTikTok
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#NapaTherapyCenter #PhysicalTherapy #OccupationalTherapy #SpeechTherapy #AngelmanSyndrome #DisabilityAwareness #RareDisease #TherapyWorks #AdvocateForDisability #SpreadingAwareness #SpecialNeedsMom #SpecialNeedsDad #SpecialNeedsParenting #AngelmanAwareness #TherapyJourney #DisabilityAdvocate #InclusiveTherapy #RareDiseaseAwareness #SpecialNeedsCommunity #TherapyForAll #OccupationalTherapyWorks #SpeechTherapyJourney #PhysicalTherapyLife #AngelmanSupport #TherapyAdvocacy
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Liv take the antidepressant (SSRI) Prozac(fluoxetine) off label for her genetic condition, Mucopolysaccharidosis type 3 (Sanfilippo Syndrome). #sanfilipposyndrome #genetics #rare #raredisease #fyp #specialneedsmom
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Replying to @Pixie it’s a 💩situation to be in and my heart goes out to you!! you’d hope that clinical trials would help and maybe even prioritize chronically ill people but sadly they don’t because anytime they are sick, have an issue, or hospitalization they have to report it which will hurt them in the long run #Inverted #raredisease #sanfilippo #sanfilipposyndrome #genetics #clinicals #clinicaltrials #DidYouKnow #howitworks #chonicillness #LearnOnTikTok #learnfromme #truthhurts #science #cars #invisibleillness #themoreyouknow #disabilityparenting #navigatingaterminaldisease #howclinicaltrialswork101 #momonamission #carterschallenge
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📣 Life Update: Upcoming Surgeries and Facing Fears For most patients with a tracheostomy, regular trache changes are a routine outpatient procedure. But for me, it’s a completely different story. Because my left lung no longer functions and the risk of coding is so high, I can only have my trache changed under anesthesia in the OR. Typically, I undergo this surgery every year or so, but it’s been since July 2023 that my trache hasn’t been replaced. On top of that, I’m dealing with a protruding metal rod in my right arm that’s nearly breaking through my skin. It’s a painful reminder that I need orthopedic surgery as soon as possible, and I’m currently waiting on my referral to see a new orthopedic surgeon. Thankfully, my head and neck surgeon, Dr. Paul Kedeshian, has decided to combine the trache change with the orthopedic procedure, killing two birds with one stone. While it’s reassuring to tackle both issues at once, I’d be lying if I said I wasn’t scared. This will be my first surgery without my mom, my ultimate source of strength and moral support. Not having her around feels like a huge void, and it’s hard not to feel hesitant about what’s ahead. But I know she would want me to face these challenges head-on, just like she always taught me. I’m praying everything goes smoothly because I have so many projects in the works, and I want to keep pushing forward—not just for myself, but for Mama Bonezz. Even after she’s gone, I’m determined to keep making her proud. Thank you to everyone who continues to support me on this journey. Your love and encouragement mean everything. 💜 #MizterBonezz #LifeUpdate #SurgeryJourney #Tracheostomy #OrthopedicSurgery #HealthChallenges #Resilience #StayStrong #KeepFighting #DisabilityAwareness #ChronicIllnessWarrior #OsteogenesisImperfecta #RareDisease #MamaBonezz #MakingMamaProud #MentalStrength #PrayersUp #NeverGiveUp #MusicIsMedicine #OvercomingObstacles #LifeWithOI #Inspiration #FaithOverFear #CreativeJourney #StayPositive
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Last night we didn’t get a chance to tell everyone bye & thank you on TikTok because we were in the ER but we woke up to TikTok back and we couldn’t be more grateful because this is our biggest platform to spread the word about Ella’s rare conditions♥️ our sweet girl caught Flu type A 🤟🏼 #fyp #ellaslittlesteps #ostomyawareness #ostomypositivity #raredisease #STARsyndrome #10secondchallenge #kidneydisease #fluA #fory #urostomy
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