rarediseaseawareness hashtag performance

#RareDiseaseAwareness highlights the struggles of individuals with uncommon conditions, promotes education, fosters community support, raises visibility, shares personal stories, advocates for research funding, and encourages empathy and understanding worldwide.

Asthma is kicking Lily's butt. 😞🥺 #asthma #asthmaproblems #rarediseaseawareness #awareness #cutislaxa #toddlersoftiktok #toddler #toddlertok #toddlermom #MomsofTikTok #momtok

Asthma is kicking Lily's butt. 😞🥺 #asthma #asthmaproblems #rarediseaseawareness #awareness #cutislaxa #toddlersoftiktok #toddler #toddlertok #toddlermom #MomsofTikTok #momtok

Sanfilippo Syndrome progression of facial features. #sanfilipposyndrome #MomsofTikTok #terminalillness #rarediseaseawareness #childhoodalzheimers #fyp

Sanfilippo Syndrome progression of facial features. #sanfilipposyndrome #MomsofTikTok #terminalillness #rarediseaseawareness #childhoodalzheimers #fyp

I do get very tearful, so I apologize. This is my attempt at being an open book to every part of this diagnosis. Liv is the most amazing girl, and the world will know her story. Please repost if you can 💜#sanfilipposyndrome #rarebeauty #rarediseaseawareness #diagnosisday #fyp

I do get very tearful, so I apologize. This is my attempt at being an open book to every part of this diagnosis. Liv is the most amazing girl, and the world will know her story. Please repost if you can 💜#sanfilipposyndrome #rarebeauty #rarediseaseawareness #diagnosisday #fyp

In case TikTok does go away, we want to say THANK YOU! Thank you to every single one of you who have followed along this journey with us! We have been so fortunate to share about Lily's genetic condition, Cutis Laxa, on this app. We have brought awareness, met some other CL families and educate others on what CL is. We are so incredibly thankful and grateful. Please follow us on instagram in case this app does go away. IG: @mrs.allieglazener #CapCut #tiktokban #cutislaxa #awareness #rarediseaseawareness #toddlersoftiktok #toddler #toddlertok #toddlermom #MomsofTikTok #momtok #fyp #viralvideo #viraltiktok #foryoupage

In case TikTok does go away, we want to say THANK YOU! Thank you to every single one of you who have followed along this journey with us! We have been so fortunate to share about Lily's genetic condition, Cutis Laxa, on this app. We have brought awareness, met some other CL families and educate others on what CL is. We are so incredibly thankful and grateful. Please follow us on instagram in case this app does go away. IG: @mrs.allieglazener #CapCut #tiktokban #cutislaxa #awareness #rarediseaseawareness #toddlersoftiktok #toddler #toddlertok #toddlermom #MomsofTikTok #momtok #fyp #viralvideo #viraltiktok #foryoupage

Mama's little buddy 🩷 #toddlersoftiktok #toddler #toddlertok #toddlermom #MomsofTikTok #bestfriend #rarediseaseawareness #awareness #cutislaxa

Mama's little buddy 🩷 #toddlersoftiktok #toddler #toddlertok #toddlermom #MomsofTikTok #bestfriend #rarediseaseawareness #awareness #cutislaxa

#genetics #MomsofTikTok #sanfilipposyndrome #terminalillness #rarediseaseawareness #childhoodalzheimers #specialneedsmom

#genetics #MomsofTikTok #sanfilipposyndrome #terminalillness #rarediseaseawareness #childhoodalzheimers #specialneedsmom

I'm ready to see a difference in her breathing... so far it's only helping temporarily. 😭 #asthma #asthmaproblems #rarediseaseawareness #awareness #cutislaxa #toddlersoftiktok #toddler #toddlertok #toddlermom #MomsofTikTok #momtok

I'm ready to see a difference in her breathing... so far it's only helping temporarily. 😭 #asthma #asthmaproblems #rarediseaseawareness #awareness #cutislaxa #toddlersoftiktok #toddler #toddlertok #toddlermom #MomsofTikTok #momtok

#rarediseaseawareness #awareness #cutislaxa #toddlersoftiktok #toddler #toddlertok #toddlermom #MomsofTikTok #momtok

#rarediseaseawareness #awareness #cutislaxa #toddlersoftiktok #toddler #toddlertok #toddlermom #MomsofTikTok #momtok

MAKE SURE TO FOLLOW OUR INSTAGRAM! 🚨@mrs.allieglazener #tiktokban #rarediseaseawareness #awareness #cutislaxa #toddlersoftiktok #toddler #toddlertok #toddlermom #MomsofTikTok #momtok

MAKE SURE TO FOLLOW OUR INSTAGRAM! 🚨@mrs.allieglazener #tiktokban #rarediseaseawareness #awareness #cutislaxa #toddlersoftiktok #toddler #toddlertok #toddlermom #MomsofTikTok #momtok

#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

Follow our instagram! @Mrs.allieglazener #tiktokban #rarediseaseawareness #awareness #cutislaxa #toddlersoftiktok #toddler #toddlertok #toddlermom #MomsofTikTok

Follow our instagram! @Mrs.allieglazener #tiktokban #rarediseaseawareness #awareness #cutislaxa #toddlersoftiktok #toddler #toddlertok #toddlermom #MomsofTikTok

I am not the same person I was before Liv’s terminal diagnosis, and that’s ok! A diagnosis like that for your child flips your world upside down. I have a new perspective on lots of things, and no longer sweat the small stuff. Life is too short. #sanfilipposyndrome #iamdrewiamdanny #rarebeauty #rarediseaseawareness #fyp #MomsofTikTok

I am not the same person I was before Liv’s terminal diagnosis, and that’s ok! A diagnosis like that for your child flips your world upside down. I have a new perspective on lots of things, and no longer sweat the small stuff. Life is too short. #sanfilipposyndrome #iamdrewiamdanny #rarebeauty #rarediseaseawareness #fyp #MomsofTikTok

How I am securing my Neria with a sugar patch since the adapter is bigger than the others. #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

#chronicillness #chronicillnesswarrior #surgery #chronicillnessfyp #surgerytiktok #surgery #hospital #fyp #rarediseaseawareness #dayinmylife #dayinthelife #invisibleillness #chronicallyill #notalldisabilitiesarevisible #chronicillnessawareness #chronicillnesstiktok #sickofbeingsick #silentbattles #chronicillnesshypehouse #invisibledisability #raredisease #chronicillnesscheck #surgerytok #surgeryrecovery

reaction so bad i put ts on my allergy list #chronicillness #chronicillnessawareness #pots #potsawareness #heds #hedsawareness #ehlersdanlossyndrome #mcas #mcasawareness #dysautonomia #dysautonomiaawareness #mals #malsawareness #smas #smasawareness #pcos #pcosawareness #gastroparesis #gastroparesisawareness #epilepsy #epilepsyawareness #pnes #pnesawareness #feedingtubeawareness #gtube #meangene #raredisease #rarediseaseawareness #crps #crpsawareness #chronicpain #chronicfatigue

In 2022, I was living in Colorado and working as a server at a taco restaurant. At first, everything seemed fine. I was busy but managing. About five months in, though, I started noticing small, strange changes. I became clumsier, tripping over rugs or sometimes nothing at all. I began dropping things—plates, drinks, and food—often during my shifts. It was embarrassing and frustrating. I assumed I was simply burnt out from working three to four 12-hour double shifts a week. My doctor agreed, saying it was likely just exhaustion, and I tried to push through. But as time passed, things didn’t get better—they got worse. The tightness I first felt in my feet spread to my legs, making them weaker and making it harder to keep my balance. My left arm started losing strength, and over time, the muscle itself began to thin. Twitching followed, starting in my left leg and gradually spreading to the rest of my body. Even the migraines I had dealt with for years intensified, becoming more severe and harder to manage. These symptoms made daily life increasingly challenging, but I still didn’t fully understand what was happening to me. For over a year and a half, I drove across the country, seeking answers. I went from one doctor to another, from specialist to specialist, desperate to figure out what was wrong. Finally, I ended up at the Mayo Clinic in Arizona, sitting in the office of a geneticist. After several rounds of extensive genetic testing—some of which took six months to process—I received a diagnosis: I have a rare mutation in my SLC1A2 gene. This mutation has documented links to epilepsy and neurodegenerative diseases like ALS and Alzheimer’s. It’s incredibly rare—fewer than a few hundred people worldwide are known to have this mutation, about 1 in 17.83 million. For a brief moment, I felt relief. I finally had answers. But those answers only brought more uncertainty. There’s still so much the medical community doesn’t know about this mutation. Unfortunately, this diagnosis also came with the confirmation of epilepsy and, more recently, a referral to an ALS clinic for further evaluation. The weight of these diagnoses has been overwhelming. Life has started to feel heavy, and I’ve found myself withdrawing, isolating more than ever. Some days, it’s hard to see a way forward. Still, I refuse to let this become my prison. I have a life to live, a purpose to fulfill, and a platform to raise awareness about rare diseases like mine. For anyone living with a rare disease or chronic illness, I see you. I understand how exhausting it is to face daily struggles, how frustrating it feels when once-simple tasks become challenges, and how vulnerable it feels to ask for help. But I want you to remember this: you are still you. You are not defined by your illness. Laugh until you cry. Cry because it’s overwhelming. Smile when you can. Feel everything—every bit of joy, sadness, and frustration. But no matter what, don’t give in. Don’t give up. You are stronger than you realize, and you don’t deserve to let this beat you. Keep fighting. Keep hoping. Keep living. You are not alone, and together, we are stronger than the challenges we face. #fyp #foryoupage #youresofunny #youresofunnytrend #rare #raredisease #rarediseaseawareness #chronic #chronicilless #chronicillnessawareness #awareness #advocacy #als #alsawareness #alzheimersawareness #alzheimers #epilepsy #epilepsyawareness #ataxia #spasticity #neuro #neuromuscular #neurology #neurologytiktok #neurologicaldisorder #change #positivity #Love #hope #disabled #disabledtiktok #disability #disabilitytiktok #disabilityawareness #disabledfriends #disabledcreator #supportdisabledcreators

In 2022, I was living in Colorado and working as a server at a taco restaurant. At first, everything seemed fine. I was busy but managing. About five months in, though, I started noticing small, strange changes. I became clumsier, tripping over rugs or sometimes nothing at all. I began dropping things—plates, drinks, and food—often during my shifts. It was embarrassing and frustrating. I assumed I was simply burnt out from working three to four 12-hour double shifts a week. My doctor agreed, saying it was likely just exhaustion, and I tried to push through. But as time passed, things didn’t get better—they got worse. The tightness I first felt in my feet spread to my legs, making them weaker and making it harder to keep my balance. My left arm started losing strength, and over time, the muscle itself began to thin. Twitching followed, starting in my left leg and gradually spreading to the rest of my body. Even the migraines I had dealt with for years intensified, becoming more severe and harder to manage. These symptoms made daily life increasingly challenging, but I still didn’t fully understand what was happening to me. For over a year and a half, I drove across the country, seeking answers. I went from one doctor to another, from specialist to specialist, desperate to figure out what was wrong. Finally, I ended up at the Mayo Clinic in Arizona, sitting in the office of a geneticist. After several rounds of extensive genetic testing—some of which took six months to process—I received a diagnosis: I have a rare mutation in my SLC1A2 gene. This mutation has documented links to epilepsy and neurodegenerative diseases like ALS and Alzheimer’s. It’s incredibly rare—fewer than a few hundred people worldwide are known to have this mutation, about 1 in 17.83 million. For a brief moment, I felt relief. I finally had answers. But those answers only brought more uncertainty. There’s still so much the medical community doesn’t know about this mutation. Unfortunately, this diagnosis also came with the confirmation of epilepsy and, more recently, a referral to an ALS clinic for further evaluation. The weight of these diagnoses has been overwhelming. Life has started to feel heavy, and I’ve found myself withdrawing, isolating more than ever. Some days, it’s hard to see a way forward. Still, I refuse to let this become my prison. I have a life to live, a purpose to fulfill, and a platform to raise awareness about rare diseases like mine. For anyone living with a rare disease or chronic illness, I see you. I understand how exhausting it is to face daily struggles, how frustrating it feels when once-simple tasks become challenges, and how vulnerable it feels to ask for help. But I want you to remember this: you are still you. You are not defined by your illness. Laugh until you cry. Cry because it’s overwhelming. Smile when you can. Feel everything—every bit of joy, sadness, and frustration. But no matter what, don’t give in. Don’t give up. You are stronger than you realize, and you don’t deserve to let this beat you. Keep fighting. Keep hoping. Keep living. You are not alone, and together, we are stronger than the challenges we face. #fyp #foryoupage #youresofunny #youresofunnytrend #rare #raredisease #rarediseaseawareness #chronic #chronicilless #chronicillnessawareness #awareness #advocacy #als #alsawareness #alzheimersawareness #alzheimers #epilepsy #epilepsyawareness #ataxia #spasticity #neuro #neuromuscular #neurology #neurologytiktok #neurologicaldisorder #change #positivity #Love #hope #disabled #disabledtiktok #disability #disabilitytiktok #disabilityawareness #disabledfriends #disabledcreator #supportdisabledcreators

#hospital #chronicillnesswarrior #chronicillness #chronicillnessfyp #fyp #rarediseaseawareness #invisibleillness #chronicallyill #chronicillnessthings #rarediseasewarrior #notalldisabilitiesarevisible #chronicillnessawareness #chronicillnesstiktok #sickofbeingsick #chronicillnesshypehouse #invisibledisability #raredisease #chronicillnesscheck #invisibledisabilitieswarrior

Oliver you are amazing! #pt #physicaltherapy #rarediseaseawareness #lss #ot #occupationaltherapy #slp #speechtherapy #onthisday

Oliver you are amazing! #pt #physicaltherapy #rarediseaseawareness #lss #ot #occupationaltherapy #slp #speechtherapy #onthisday

#didigettoopolitical? #politicaltok #2025 #chronicillnesswarrior #chronicillness #chronicillnessfyp #fyp #rarediseaseawareness #invisibleillness #chronicallyill #notalldisabilitiesarevisible #chronicillnessawareness #chronicillnesstiktok #sickofbeingsick #invisibledisability #raredisease #chronicillnesscheck #politics #politicstiktok

This man is the definition of will power. They told him he would recover and live a healthy life after what they believed was an “ADEM” attack only to find out he has a rare autoimmune disease called MOGAD & to make it even less treatable he has an abnormal case with reoccurring flare ups, chronic kidney failure & he doesn’t respond well to any treatment & his kidneys are starting to no longer respond to his weekly infusions that were helping them function & keeping him alive & out of the hospital. But through it all this man has never gave up & I will forever be grateful for that. Watching the videos of him squatting in the ER & having his first immuno suppressant therapy I remember how hard those times were on him mentally & even though the constant pain & fatigue weighs him down every day I am still so proud of how far he’s come 🥹🙏🏻😭 #campbelllchaos #chronicillness #mogad #raredisease #rarediseaseawareness #caregiver #hospitaltok #mattystrong #campbellstrong

This man is the definition of will power. They told him he would recover and live a healthy life after what they believed was an “ADEM” attack only to find out he has a rare autoimmune disease called MOGAD & to make it even less treatable he has an abnormal case with reoccurring flare ups, chronic kidney failure & he doesn’t respond well to any treatment & his kidneys are starting to no longer respond to his weekly infusions that were helping them function & keeping him alive & out of the hospital. But through it all this man has never gave up & I will forever be grateful for that. Watching the videos of him squatting in the ER & having his first immuno suppressant therapy I remember how hard those times were on him mentally & even though the constant pain & fatigue weighs him down every day I am still so proud of how far he’s come 🥹🙏🏻😭 #campbelllchaos #chronicillness #mogad #raredisease #rarediseaseawareness #caregiver #hospitaltok #mattystrong #campbellstrong

Replying to @wander_through_wonder_ #shortanagenesyndrome #trichologist #trichology #hairloss #rarediseaseawareness #rarecondition #mandybbeauty #hairlosssolutions #hairlossremedy #hairhelp #hairlossawareness

Replying to @wander_through_wonder_ #shortanagenesyndrome #trichologist #trichology #hairloss #rarediseaseawareness #rarecondition #mandybbeauty #hairlosssolutions #hairlossremedy #hairhelp #hairlossawareness

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