Ok. So “i haven’t done shark hat in a while” collided with “i haven’t done a PT/health video update in a while”
And now we have:
Mickey in Shark Hat shows you how their core (almost) works!
#progressiveillness #musculardegeneration #raredisorder #sharkhat
And now we have:
Mickey in Shark Hat shows you how their core (almost) works!
#progressiveillness #musculardegeneration #raredisorder #sharkhat
March 28, 2026 at 9:23 PM
Ok. So “i haven’t done shark hat in a while” collided with “i haven’t done a PT/health video update in a while”
And now we have:
Mickey in Shark Hat shows you how their core (almost) works!
#progressiveillness #musculardegeneration #raredisorder #sharkhat
And now we have:
Mickey in Shark Hat shows you how their core (almost) works!
#progressiveillness #musculardegeneration #raredisorder #sharkhat
(⚠️‼️WARNING: SCARY FACE JUMPSCARE WARNING!!!⚠️‼️)
✨🧪🧬🥼💜W.I.P💜🥼🧬🧪✨
#WIP #W.I.P #Sprunki #SprunkiOC #Sprunkiincredibox #OC #OCArt #Art #DigitalArt #MadScientist #Science #MentalCondition #MentalHealthAwarenessDay #MentalIllness #Disorder #RareCondition #RareDisorder #Mental #Crazy #Freak
✨🧪🧬🥼💜W.I.P💜🥼🧬🧪✨
#WIP #W.I.P #Sprunki #SprunkiOC #Sprunkiincredibox #OC #OCArt #Art #DigitalArt #MadScientist #Science #MentalCondition #MentalHealthAwarenessDay #MentalIllness #Disorder #RareCondition #RareDisorder #Mental #Crazy #Freak
January 21, 2026 at 3:11 PM
(⚠️‼️WARNING: SCARY FACE JUMPSCARE WARNING!!!⚠️‼️)
✨🧪🧬🥼💜W.I.P💜🥼🧬🧪✨
#WIP #W.I.P #Sprunki #SprunkiOC #Sprunkiincredibox #OC #OCArt #Art #DigitalArt #MadScientist #Science #MentalCondition #MentalHealthAwarenessDay #MentalIllness #Disorder #RareCondition #RareDisorder #Mental #Crazy #Freak
✨🧪🧬🥼💜W.I.P💜🥼🧬🧪✨
#WIP #W.I.P #Sprunki #SprunkiOC #Sprunkiincredibox #OC #OCArt #Art #DigitalArt #MadScientist #Science #MentalCondition #MentalHealthAwarenessDay #MentalIllness #Disorder #RareCondition #RareDisorder #Mental #Crazy #Freak
From @frankejames.bsky.social
theprovince.com/opinion/op-e... #Ataxia #raredisorder #raredisease #medicare #chronichealth
theprovince.com/opinion/op-e... #Ataxia #raredisorder #raredisease #medicare #chronichealth
Franke James: Reframing my life after a rare degenerative disease diagnosis
Being diagnosed with a rare disease is a challenge but it’s not game over. I am fighting a degenerative disease by emphasizing new growth.
theprovince.com
January 25, 2025 at 12:40 AM
This damn autoimmune disorder is no joke....
#microdosinghell #myallergiesarekillingme #tryingnottodie #itsadailything #raredisease #raredisorder #autoimmunedisease #autoimmunedisorder #addisonsdisease #ifyoucantmakeyourownstoreboughtisfine #lowcortisol #adrenalglands #minearebroken
#microdosinghell #myallergiesarekillingme #tryingnottodie #itsadailything #raredisease #raredisorder #autoimmunedisease #autoimmunedisorder #addisonsdisease #ifyoucantmakeyourownstoreboughtisfine #lowcortisol #adrenalglands #minearebroken
March 12, 2025 at 5:10 PM
About 6k-9k people in the US have Rett Syndrome. I'd never heard of it until my cousin's granddaughter Skylar was diagnosed with it. This is a video of her and her bestfriend Ella. Im hoping it helps spread awareness
#RettSyndrome #RareDisorder
youtu.be/W2FGLB-fa7Y?...
#RettSyndrome #RareDisorder
youtu.be/W2FGLB-fa7Y?...
Nonspeaking Best Friends with the Same Rare Syndrome (Rett)
YouTube video by Special Books by Special Kids
youtu.be
September 26, 2026 at 7:20 PM
About 6k-9k people in the US have Rett Syndrome. I'd never heard of it until my cousin's granddaughter Skylar was diagnosed with it. This is a video of her and her bestfriend Ella. Im hoping it helps spread awareness
#RettSyndrome #RareDisorder
youtu.be/W2FGLB-fa7Y?...
#RettSyndrome #RareDisorder
youtu.be/W2FGLB-fa7Y?...
“It’s worst when night comes. In the #darkness, the #static is most vivid. But eventually, the scattered stars dancing behind my eyelids drift away, and I sink into the dark abyss of sleep.": buff.ly/kx0mKRs
via @nautil.us
#VisualSnow #RareDisorder #EyeHealth
via @nautil.us
#VisualSnow #RareDisorder #EyeHealth
Why I See Static Everywhere
What we know about a mysterious condition called visual snow.
buff.ly
May 26, 2025 at 11:30 PM
“It’s worst when night comes. In the #darkness, the #static is most vivid. But eventually, the scattered stars dancing behind my eyelids drift away, and I sink into the dark abyss of sleep.": buff.ly/kx0mKRs
via @nautil.us
#VisualSnow #RareDisorder #EyeHealth
via @nautil.us
#VisualSnow #RareDisorder #EyeHealth
My op-ed about the federal government's termination of the ACHDNC was just published on @statnews.com! I was driven to write this because newborn screening changed the course of my life forever. Please read and repost. www.statnews.com/2025/04/24/a...
#raredisease #raredisorder #newbornscreening
#raredisease #raredisorder #newbornscreening
The volunteer committee advising on newborn screening must be reinstated
Cutting the federal newborn screening advisory committee either demonstrates a lack of understanding of the group’s function or represents a worrisome policy shift.
www.statnews.com
April 24, 2025 at 8:20 PM
My op-ed about the federal government's termination of the ACHDNC was just published on @statnews.com! I was driven to write this because newborn screening changed the course of my life forever. Please read and repost. www.statnews.com/2025/04/24/a...
#raredisease #raredisorder #newbornscreening
#raredisease #raredisorder #newbornscreening
I have eye issues associated with my cerebellar ataxia. My eyes can't follow a moving object between 2 points accurately, the muscles are weak & lack control. This is called abnormal saccades, & exercises to try and slow its advance often don't work.
This+poor balance=falls.
#ataxia #raredisorder
This+poor balance=falls.
#ataxia #raredisorder
February 11, 2026 at 11:49 AM
I have eye issues associated with my cerebellar ataxia. My eyes can't follow a moving object between 2 points accurately, the muscles are weak & lack control. This is called abnormal saccades, & exercises to try and slow its advance often don't work.
This+poor balance=falls.
#ataxia #raredisorder
This+poor balance=falls.
#ataxia #raredisorder
journals.lww.com/continuum/fu...
Chronic Immune-Mediated Demyelinating Neuropathies
Karissa Gable, MDPeripheral Nerve and Motor Neuron Disorders p. 1357-1377 October 2023, Vol.29
#CIDP #ChronicInflammatoryDemyelinatingPolyneuropathy #RareDisorder #AutoimmuneDisease
Chronic Immune-Mediated Demyelinating Neuropathies
Karissa Gable, MDPeripheral Nerve and Motor Neuron Disorders p. 1357-1377 October 2023, Vol.29
#CIDP #ChronicInflammatoryDemyelinatingPolyneuropathy #RareDisorder #AutoimmuneDisease
Chronic Immune-Mediated Demyelinating Neuropathies : CONTINUUM: Lifelong Learning in Neurology
mics of immune-mediated neuropathies are also discussed.
LATEST DEVELOPMENTS
The underlying pathophysiology of chronic demyelinating neuropathies is heterogeneous, and components of both humoral an...
journals.lww.com
November 4, 2023 at 1:50 PM
journals.lww.com/continuum/fu...
Chronic Immune-Mediated Demyelinating Neuropathies
Karissa Gable, MDPeripheral Nerve and Motor Neuron Disorders p. 1357-1377 October 2023, Vol.29
#CIDP #ChronicInflammatoryDemyelinatingPolyneuropathy #RareDisorder #AutoimmuneDisease
Chronic Immune-Mediated Demyelinating Neuropathies
Karissa Gable, MDPeripheral Nerve and Motor Neuron Disorders p. 1357-1377 October 2023, Vol.29
#CIDP #ChronicInflammatoryDemyelinatingPolyneuropathy #RareDisorder #AutoimmuneDisease
Reframing my life after a rare degenerative disease diagnosis
Being diagnosed with a rare disease is a tough challenge but it’s not game over. I am fighting Ataxia by emphasizing new growth, says @frankejames.bsky.social
theprovince.com/opinion/op-e...
#Ataxia #raredisorder #raredisease
Being diagnosed with a rare disease is a tough challenge but it’s not game over. I am fighting Ataxia by emphasizing new growth, says @frankejames.bsky.social
theprovince.com/opinion/op-e...
#Ataxia #raredisorder #raredisease
Franke James: Reframing my life after a rare degenerative disease diagnosis
Being diagnosed with a rare disease is a challenge but it’s not game over. I am fighting a degenerative disease by emphasizing new growth.
theprovince.com
January 27, 2025 at 7:04 PM
Reframing my life after a rare degenerative disease diagnosis
Being diagnosed with a rare disease is a tough challenge but it’s not game over. I am fighting Ataxia by emphasizing new growth, says @frankejames.bsky.social
theprovince.com/opinion/op-e...
#Ataxia #raredisorder #raredisease
Being diagnosed with a rare disease is a tough challenge but it’s not game over. I am fighting Ataxia by emphasizing new growth, says @frankejames.bsky.social
theprovince.com/opinion/op-e...
#Ataxia #raredisorder #raredisease
Short-video social media fosters community and shares lived experiences of rare diseases, offering insights that could enhance genomic care and patient support #GIMO #RareDisease #RareDisorder #genetics #genomics bit.ly/43ONvPh
March 24, 2025 at 10:39 PM
Short-video social media fosters community and shares lived experiences of rare diseases, offering insights that could enhance genomic care and patient support #GIMO #RareDisease #RareDisorder #genetics #genomics bit.ly/43ONvPh
🧠 “She ate her daughter’s cancer-treatment hair… and it nearly killed her.”
Subscribe to read more on www.pouringpotions.com
#Trichophagia #RapunzelSyndrome #ChicagoMed #RareDisorder #MentalHealthAwareness #Trichotillomania #HairEatingDisorder #MedicalDrama #MedicalAwareness #DigestiveHealth"
Subscribe to read more on www.pouringpotions.com
#Trichophagia #RapunzelSyndrome #ChicagoMed #RareDisorder #MentalHealthAwareness #Trichotillomania #HairEatingDisorder #MedicalDrama #MedicalAwareness #DigestiveHealth"
June 28, 2025 at 4:23 AM
🧠 “She ate her daughter’s cancer-treatment hair… and it nearly killed her.”
Subscribe to read more on www.pouringpotions.com
#Trichophagia #RapunzelSyndrome #ChicagoMed #RareDisorder #MentalHealthAwareness #Trichotillomania #HairEatingDisorder #MedicalDrama #MedicalAwareness #DigestiveHealth"
Subscribe to read more on www.pouringpotions.com
#Trichophagia #RapunzelSyndrome #ChicagoMed #RareDisorder #MentalHealthAwareness #Trichotillomania #HairEatingDisorder #MedicalDrama #MedicalAwareness #DigestiveHealth"
Baroreflex failure (BF) is a rare form of autonomic dysfunction where the baroreflex mechanisms are not working properly.
Learn more: https://dysautonomiasupport.pulse.ly/fes0gmxgdw
#BaroreflexFailure #BF #dysautonomia #chronicillnesssupport #raredisorder
Learn more: https://dysautonomiasupport.pulse.ly/fes0gmxgdw
#BaroreflexFailure #BF #dysautonomia #chronicillnesssupport #raredisorder
June 16, 2025 at 5:59 PM
Baroreflex failure (BF) is a rare form of autonomic dysfunction where the baroreflex mechanisms are not working properly.
Learn more: https://dysautonomiasupport.pulse.ly/fes0gmxgdw
#BaroreflexFailure #BF #dysautonomia #chronicillnesssupport #raredisorder
Learn more: https://dysautonomiasupport.pulse.ly/fes0gmxgdw
#BaroreflexFailure #BF #dysautonomia #chronicillnesssupport #raredisorder
Looking forward to sharing tips & tricks for #raredisorder caregivers at tonight's #PraderWilli caregiver group @ NYU Langone Health! The #PWS community funded a pilot that led to NIH-funded Project WellCAST - & now we get to start sharing back what we're learning through this project!
November 19, 2024 at 11:34 PM
Looking forward to sharing tips & tricks for #raredisorder caregivers at tonight's #PraderWilli caregiver group @ NYU Langone Health! The #PWS community funded a pilot that led to NIH-funded Project WellCAST - & now we get to start sharing back what we're learning through this project!
There Is a Rare Disorder Where People See Other Faces as Dragons #Science #HealthandMedicine #MentalHealth #RareDisorder #Neurobiology
There Is a Rare Disorder Where People See Other Faces as Dragons
What is prosopometamorphopsia? Learn more about the brain condition that can make it appear as though faces are demonic or melting.
purescience.news
September 9, 2025 at 9:00 AM
There Is a Rare Disorder Where People See Other Faces as Dragons #Science #HealthandMedicine #MentalHealth #RareDisorder #Neurobiology
The NMD4C and MDC are pleased to invite you to our upcoming CPD-accredited webinar!
✨ Talk Title: Cardiac Neuromuscular Disease: Essentials for Neuromuscular Clinicians.
🗓️ Date: Tuesday June 3, 2025
⏰Time: 6pm ET
Register at: bit.ly/CardiacNMDs
#cardiac #NMD #cardiachealth #raredisorder
✨ Talk Title: Cardiac Neuromuscular Disease: Essentials for Neuromuscular Clinicians.
🗓️ Date: Tuesday June 3, 2025
⏰Time: 6pm ET
Register at: bit.ly/CardiacNMDs
#cardiac #NMD #cardiachealth #raredisorder
May 15, 2025 at 8:17 PM
The NMD4C and MDC are pleased to invite you to our upcoming CPD-accredited webinar!
✨ Talk Title: Cardiac Neuromuscular Disease: Essentials for Neuromuscular Clinicians.
🗓️ Date: Tuesday June 3, 2025
⏰Time: 6pm ET
Register at: bit.ly/CardiacNMDs
#cardiac #NMD #cardiachealth #raredisorder
✨ Talk Title: Cardiac Neuromuscular Disease: Essentials for Neuromuscular Clinicians.
🗓️ Date: Tuesday June 3, 2025
⏰Time: 6pm ET
Register at: bit.ly/CardiacNMDs
#cardiac #NMD #cardiachealth #raredisorder
The #story of the #baby who challenged #doctors with his #RareDisorder for 20 years zorz.it/ZRGns | #60MinutesAustralia #TommTennent #researchers #SpecialCondition #FascinatingDiscovery #HyaluronicAcid
April 14, 2025 at 4:35 PM
The #story of the #baby who challenged #doctors with his #RareDisorder for 20 years zorz.it/ZRGns | #60MinutesAustralia #TommTennent #researchers #SpecialCondition #FascinatingDiscovery #HyaluronicAcid
What is Hypermobility? #hypermobile #zebra #hypermobility #collagen #dazzle #bendy #stretchy #soft #loosef="/hashtag/loosejoints" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#loosejoints #loose #jointpain #genetic #chronicillness #chronicpain #raredisease #raredisorder #comorbidities
What Is Hypermobility?
Hypermobility is characterized by joints with an unusually large range of movement, often leading to joint pain, fatigue, and injuries. The author describes personal challenges associated with hypermobility, suspecting Ehlers-Danlos Syndrome. Living with these conditions has caused significant life alterations, highlighting the need for better understanding and support for those affected.
invisiblymisdiagnosed.com
July 7, 2025 at 12:48 AM
What is Hypermobility? #hypermobile #zebra #hypermobility #collagen #dazzle #bendy #stretchy #soft #loosef="/hashtag/loosejoints" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#loosejoints #loose #jointpain #genetic #chronicillness #chronicpain #raredisease #raredisorder #comorbidities
RNA Interference Drug Excels in Clinical Trials to Treat #RareDisorder
The Scientist - 404 Error
A 404 has occurred. Oops. It appears the page you are looking for is missing.
mobile.the-scientist.com
June 17, 2025 at 5:15 PM
RNA Interference Drug Excels in Clinical Trials to Treat #RareDisorder
Excited to #share my #raredisease story alongside some impressive ppl #CRISPR #science #hope #beyondthediagnosis #mucklewells #raredisorder
June 17, 2025 at 4:37 PM
Excited to #share my #raredisease story alongside some impressive ppl #CRISPR #science #hope #beyondthediagnosis #mucklewells #raredisorder