Polymiositis Sucks. It feels like there’s acid running through my veins whenever I try to do a simple movement like going up the stairs
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#OurSky #polymiositis #geneticdisorder
#muscledisorder #exercise
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#OurSky #polymiositis #geneticdisorder
#muscledisorder #exercise
March 10, 2026 at 5:44 PM
Polymiositis Sucks. It feels like there’s acid running through my veins whenever I try to do a simple movement like going up the stairs
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#OurSky #polymiositis #geneticdisorder
#muscledisorder #exercise
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#OurSky #polymiositis #geneticdisorder
#muscledisorder #exercise
Tips for talking to your child about FA: https://bit.ly/474QkgT #FriedreichsAtaxiaNews #FriedreichsAtaxiaCommunity #GeneticDisorder #BioNews
December 5, 2025 at 3:30 AM
Tips for talking to your child about FA: https://bit.ly/474QkgT #FriedreichsAtaxiaNews #FriedreichsAtaxiaCommunity #GeneticDisorder #BioNews
Meet our #NF mascot #Mojo!
He's so excited to help bring more attention and support to the #NF1 world!
(Okay... the cape just fit him and he's rolling with it 😂)
#Neurofibromatosis #GeneticDisorder #ChildrensTumorFoundation
#CatSky #PetSky
He's so excited to help bring more attention and support to the #NF1 world!
(Okay... the cape just fit him and he's rolling with it 😂)
#Neurofibromatosis #GeneticDisorder #ChildrensTumorFoundation
#CatSky #PetSky
May 5, 2025 at 1:17 AM
Meet our #NF mascot #Mojo!
He's so excited to help bring more attention and support to the #NF1 world!
(Okay... the cape just fit him and he's rolling with it 😂)
#Neurofibromatosis #GeneticDisorder #ChildrensTumorFoundation
#CatSky #PetSky
He's so excited to help bring more attention and support to the #NF1 world!
(Okay... the cape just fit him and he's rolling with it 😂)
#Neurofibromatosis #GeneticDisorder #ChildrensTumorFoundation
#CatSky #PetSky
What is Cystic Fibrosis? The disease that turns every breath into a fight 💔💨
Subscribe to read more on www.pouringpotions.com
#CysticFibrosis #CFawareness #RareDisease #InvisibleIllness #GeneticDisorder #CFstrong #LungHealth #ChronicIllnessAwareness
Subscribe to read more on www.pouringpotions.com
#CysticFibrosis #CFawareness #RareDisease #InvisibleIllness #GeneticDisorder #CFstrong #LungHealth #ChronicIllnessAwareness
July 31, 2025 at 12:23 AM
What is Cystic Fibrosis? The disease that turns every breath into a fight 💔💨
Subscribe to read more on www.pouringpotions.com
#CysticFibrosis #CFawareness #RareDisease #InvisibleIllness #GeneticDisorder #CFstrong #LungHealth #ChronicIllnessAwareness
Subscribe to read more on www.pouringpotions.com
#CysticFibrosis #CFawareness #RareDisease #InvisibleIllness #GeneticDisorder #CFstrong #LungHealth #ChronicIllnessAwareness
#NORDSummit: Lee Greenwood, whose 5-year-old daughter Noa was born with #CanavanDisease, a severe #GeneticDisorder found mainly among Ashkenazi Jews. In June 2022, the girl received lifesaving #GeneTherapy and is now developing normally.
@nordrare.bsky.social
#RareDisease #RareSky #MedSky
@nordrare.bsky.social
#RareDisease #RareSky #MedSky
October 21, 2025 at 6:26 PM
#NORDSummit: Lee Greenwood, whose 5-year-old daughter Noa was born with #CanavanDisease, a severe #GeneticDisorder found mainly among Ashkenazi Jews. In June 2022, the girl received lifesaving #GeneTherapy and is now developing normally.
@nordrare.bsky.social
#RareDisease #RareSky #MedSky
@nordrare.bsky.social
#RareDisease #RareSky #MedSky
Today on the #Disability Daily #Podcast we celebrate legendary #jazz #singer with #Kallmann syndrome, Jimmy Scott!
Listen & read transcript
#Accessibility #a11y #DisabilityPride #KallmannSyndrome #GeneticDisorder #soul #music #BlackSky #MusicSky #TwinPeaks #Contralto #Cleveland #JimmyScott #voice
Listen & read transcript
#Accessibility #a11y #DisabilityPride #KallmannSyndrome #GeneticDisorder #soul #music #BlackSky #MusicSky #TwinPeaks #Contralto #Cleveland #JimmyScott #voice
July 18, 2025 at 3:35 AM
Today on the #Disability Daily #Podcast we celebrate legendary #jazz #singer with #Kallmann syndrome, Jimmy Scott!
Listen & read transcript
#Accessibility #a11y #DisabilityPride #KallmannSyndrome #GeneticDisorder #soul #music #BlackSky #MusicSky #TwinPeaks #Contralto #Cleveland #JimmyScott #voice
Listen & read transcript
#Accessibility #a11y #DisabilityPride #KallmannSyndrome #GeneticDisorder #soul #music #BlackSky #MusicSky #TwinPeaks #Contralto #Cleveland #JimmyScott #voice
A brilliant explainer from The Lily Foundation on the science behind genetic diagnosis in mitochondrial disease — featuring cake as a metaphor! 🍰
youtu.be/MCx4joZJtFY
#Mito #MitochondrialDisease #GeneticTesting #RareDisease #ClinicalResearch #TheLilyFoundation
youtu.be/MCx4joZJtFY
#Mito #MitochondrialDisease #GeneticTesting #RareDisease #ClinicalResearch #TheLilyFoundation
The recipe for explaining how mitochondrial disease is diagnosed #mito #geneticdisorder #raredisease
YouTube video by The Lily Foundation
youtu.be
November 7, 2025 at 2:23 PM
A brilliant explainer from The Lily Foundation on the science behind genetic diagnosis in mitochondrial disease — featuring cake as a metaphor! 🍰
youtu.be/MCx4joZJtFY
#Mito #MitochondrialDisease #GeneticTesting #RareDisease #ClinicalResearch #TheLilyFoundation
youtu.be/MCx4joZJtFY
#Mito #MitochondrialDisease #GeneticTesting #RareDisease #ClinicalResearch #TheLilyFoundation
"What I didn't initially connect was how my #HearingLoss might relate to another unwelcome guest in my life—#EhlersDanlosSyndrome ( #EDS)..this delightful #GeneticDisorder, known for messing with joints, connective tissues..can also impact #hearing.": buff.ly/sEwfeFt
by @unremarkableme.bsky.social
by @unremarkableme.bsky.social
Navigating Hearing Loss & EDS: The Unexpected Journey of Lip-Reading, Music, and Adaptation
Hearing loss is often imagined as a sudden, dramatic event—one day you hear, the next you don’t. But for many of us, it’s a slow, creeping change, a background process we don’t fully grasp until…
buff.ly
July 8, 2025 at 8:30 PM
"What I didn't initially connect was how my #HearingLoss might relate to another unwelcome guest in my life—#EhlersDanlosSyndrome ( #EDS)..this delightful #GeneticDisorder, known for messing with joints, connective tissues..can also impact #hearing.": buff.ly/sEwfeFt
by @unremarkableme.bsky.social
by @unremarkableme.bsky.social
Does anyone else here have #NF or specifically #NF1?
I have a kiddo with it and would love to find more community here on BlueSky.
#ChronicIllness #GeneticDisorder
Just recently kiddo had a sudden reaction to something. Not sure what. It just happens now again due to overactive Mast Cells.
I have a kiddo with it and would love to find more community here on BlueSky.
#ChronicIllness #GeneticDisorder
Just recently kiddo had a sudden reaction to something. Not sure what. It just happens now again due to overactive Mast Cells.
December 15, 2024 at 9:26 PM
Does anyone else here have #NF or specifically #NF1?
I have a kiddo with it and would love to find more community here on BlueSky.
#ChronicIllness #GeneticDisorder
Just recently kiddo had a sudden reaction to something. Not sure what. It just happens now again due to overactive Mast Cells.
I have a kiddo with it and would love to find more community here on BlueSky.
#ChronicIllness #GeneticDisorder
Just recently kiddo had a sudden reaction to something. Not sure what. It just happens now again due to overactive Mast Cells.
It's #MRI day and #XRay day for the youngest kiddo.
This isn't new to us but unfortunately there have been new symptoms which indicate new possible problems.
#NF1 can cause issues at any time including tumors literally anywhere along the nervous system.
#ChronicIllness #GeneticDisorder
This isn't new to us but unfortunately there have been new symptoms which indicate new possible problems.
#NF1 can cause issues at any time including tumors literally anywhere along the nervous system.
#ChronicIllness #GeneticDisorder
March 17, 2025 at 8:11 PM
It's #MRI day and #XRay day for the youngest kiddo.
This isn't new to us but unfortunately there have been new symptoms which indicate new possible problems.
#NF1 can cause issues at any time including tumors literally anywhere along the nervous system.
#ChronicIllness #GeneticDisorder
This isn't new to us but unfortunately there have been new symptoms which indicate new possible problems.
#NF1 can cause issues at any time including tumors literally anywhere along the nervous system.
#ChronicIllness #GeneticDisorder
Are you the first in your family diagnosed with haemochromatosis?
Just one gene from each parent is enough to inherit it — even if they don’t have it.
🔗 ha.org.au/haemochromatosis/#ha-genetics
#Haemochromatosis #IronOverload #GeneticDisorder #KnowYourGenes #HealthAwareness
Just one gene from each parent is enough to inherit it — even if they don’t have it.
🔗 ha.org.au/haemochromatosis/#ha-genetics
#Haemochromatosis #IronOverload #GeneticDisorder #KnowYourGenes #HealthAwareness
May 7, 2025 at 5:20 AM
Are you the first in your family diagnosed with haemochromatosis?
Just one gene from each parent is enough to inherit it — even if they don’t have it.
🔗 ha.org.au/haemochromatosis/#ha-genetics
#Haemochromatosis #IronOverload #GeneticDisorder #KnowYourGenes #HealthAwareness
Just one gene from each parent is enough to inherit it — even if they don’t have it.
🔗 ha.org.au/haemochromatosis/#ha-genetics
#Haemochromatosis #IronOverload #GeneticDisorder #KnowYourGenes #HealthAwareness
"Early findings suggest the drug [difluoromethylornithine / DFMO] could help people with #BachmannBuppSyndrome (BABS), a life-threatening #GeneticDisorder that affects only a small number of individuals worldwide.": buff.ly/hYJqGdr
via sciencedaily
#RareDisease #research #ClinicalTrials #medication
via sciencedaily
#RareDisease #research #ClinicalTrials #medication
A forgotten drug is giving new hope to kids with a rare disease
A decades-old drug once used to treat sleeping sickness is now showing surprising promise against an ultra-rare and life-threatening genetic disorder called Bachmann-Bupp syndrome (BABS). Early…
buff.ly
April 30, 2026 at 7:30 AM
"Early findings suggest the drug [difluoromethylornithine / DFMO] could help people with #BachmannBuppSyndrome (BABS), a life-threatening #GeneticDisorder that affects only a small number of individuals worldwide.": buff.ly/hYJqGdr
via sciencedaily
#RareDisease #research #ClinicalTrials #medication
via sciencedaily
#RareDisease #research #ClinicalTrials #medication
While I commend this young mother for standing by her child you cannot tell me a ultra sound did not see this. They never told her. They used her.
Women should be given a choice, not forced to have a disabled child.
www.youtube.com/shorts/EoFTD...
Women should be given a choice, not forced to have a disabled child.
www.youtube.com/shorts/EoFTD...
Doctors wouldn't let me see my newborn 🍼😱 #specialneeds, #specialneedsparenting, #geneticdisorder
YouTube video by Four Nine
www.youtube.com
August 8, 2026 at 9:17 PM
While I commend this young mother for standing by her child you cannot tell me a ultra sound did not see this. They never told her. They used her.
Women should be given a choice, not forced to have a disabled child.
www.youtube.com/shorts/EoFTD...
Women should be given a choice, not forced to have a disabled child.
www.youtube.com/shorts/EoFTD...
[Part 2] Understanding Ehlers-Danlos Syndrome: A Personal Exploration by www.tiktok.com/t/ZP8DpBBMQ/
#EhlersDanlosSyndrome #EDS #ChronicIllness #WomensHealth #GeneticDisorder #MedicalAwareness
#EhlersDanlosSyndrome #EDS #ChronicIllness #WomensHealth #GeneticDisorder #MedicalAwareness
November 12, 2025 at 6:09 PM
[Part 2] Understanding Ehlers-Danlos Syndrome: A Personal Exploration by www.tiktok.com/t/ZP8DpBBMQ/
#EhlersDanlosSyndrome #EDS #ChronicIllness #WomensHealth #GeneticDisorder #MedicalAwareness
#EhlersDanlosSyndrome #EDS #ChronicIllness #WomensHealth #GeneticDisorder #MedicalAwareness
Phenylketonuria (PKU)
#Phenylketonuria #PKU #MetabolicDisorder #AutosomalRecessive #GeneticDisorder #iPrkashMishra #NewbornScreening #GuthrieTest #Hyperphenylalaninemia #PediatricHealth #LowProteinDiet #Sapropterin #MaternalPKU #MedicalEducation #NursingNotes
#Phenylketonuria #PKU #MetabolicDisorder #AutosomalRecessive #GeneticDisorder #iPrkashMishra #NewbornScreening #GuthrieTest #Hyperphenylalaninemia #PediatricHealth #LowProteinDiet #Sapropterin #MaternalPKU #MedicalEducation #NursingNotes
February 24, 2026 at 12:06 PM
EMR Fingerprint
On 'Predicting genetic epilepsies through EMR fingerprints'
open.substack.com
July 2, 2025 at 7:13 PM
Comprehensive family guide to Ehlers-Danlos Syndromes! 🧬 Understanding EDS from diagnosis through daily management for the whole family. #ehlersdanlos #EDS #geneticdisorder #familysupport
https://amazon.com/gp/product/B0CLWM1R99?tag=bblnk-20
#PageTurner #ReadingTime #NewBooks
https://amazon.com/gp/product/B0CLWM1R99?tag=bblnk-20
#PageTurner #ReadingTime #NewBooks
July 29, 2025 at 12:02 AM
Comprehensive family guide to Ehlers-Danlos Syndromes! 🧬 Understanding EDS from diagnosis through daily management for the whole family. #ehlersdanlos #EDS #geneticdisorder #familysupport
https://amazon.com/gp/product/B0CLWM1R99?tag=bblnk-20
#PageTurner #ReadingTime #NewBooks
https://amazon.com/gp/product/B0CLWM1R99?tag=bblnk-20
#PageTurner #ReadingTime #NewBooks
📣 New Podcast! "Loss, Purpose, Legacy: Rosemarie Nania and the Mission Behind BELOvEDS" on @Spreaker #aorticdissection #athlete #athletemindset #belovedsfoundation #beyondthefinishline #collegeradio #ehlersdanlossyndrome #eliteathlete #elitemindset #familylegacy #geneticdisorder #grieftopurpose
Loss, Purpose, Legacy: Rosemarie Nania and the Mission Behind BELOvEDS
In this episode of Life Beyond The Finish Line, Orlandina sits with Rosemarie Nania as she shares how loss became advocacy, purpose, and legacy
After losing her brother Angelo to complications related to vascular Ehlers-Danlos syndrome (vEDS), Rosemarie Nania turned unimaginable grief into purpose.
As Founder and President of BELOvEDS, A Nania Foundation, she now works to raise awareness, support research, and help families impacted by this rare genetic condition. However, what her family discovered after Angelo’s death would change everything.
🏁 Success is just the beginning.
www.spreaker.com
September 27, 2026 at 11:30 AM
📣 New Podcast! "Loss, Purpose, Legacy: Rosemarie Nania and the Mission Behind BELOvEDS" on @Spreaker #aorticdissection #athlete #athletemindset #belovedsfoundation #beyondthefinishline #collegeradio #ehlersdanlossyndrome #eliteathlete #elitemindset #familylegacy #geneticdisorder #grieftopurpose
[Part 1] Understanding Ehlers-Danlos Syndrome: A Personal Exploration by www.tiktok.com/t/ZP8DpBBMQ/
#EhlersDanlosSyndrome #EDS #ChronicIllness #WomensHealth #GeneticDisorder #MedicalAwareness
#EhlersDanlosSyndrome #EDS #ChronicIllness #WomensHealth #GeneticDisorder #MedicalAwareness
November 12, 2025 at 6:09 PM
[Part 1] Understanding Ehlers-Danlos Syndrome: A Personal Exploration by www.tiktok.com/t/ZP8DpBBMQ/
#EhlersDanlosSyndrome #EDS #ChronicIllness #WomensHealth #GeneticDisorder #MedicalAwareness
#EhlersDanlosSyndrome #EDS #ChronicIllness #WomensHealth #GeneticDisorder #MedicalAwareness
Garg-Mishra: New Genetic Disorder Named After Indian American Scientists
Full Story: indiawest.com/garg-mishra-...
#headlines #breakingnews #trendingnews #viralnews #indiawest #news #geneticdisorder #indianamericanscientists #medicalresearch #innovationinscience #healthawareness
Full Story: indiawest.com/garg-mishra-...
#headlines #breakingnews #trendingnews #viralnews #indiawest #news #geneticdisorder #indianamericanscientists #medicalresearch #innovationinscience #healthawareness
Garg-Mishra: New Genetic Disorder Named After Indian American Scientists - IndiaWest Journal News
Garg-Mishra: New Genetic Disorder Named After Indian American Scientists.
indiawest.com
January 17, 2025 at 5:26 AM
Garg-Mishra: New Genetic Disorder Named After Indian American Scientists
Full Story: indiawest.com/garg-mishra-...
#headlines #breakingnews #trendingnews #viralnews #indiawest #news #geneticdisorder #indianamericanscientists #medicalresearch #innovationinscience #healthawareness
Full Story: indiawest.com/garg-mishra-...
#headlines #breakingnews #trendingnews #viralnews #indiawest #news #geneticdisorder #indianamericanscientists #medicalresearch #innovationinscience #healthawareness
Comprehensive family guide to Ehlers-Danlos Syndromes! 🧬 Understanding EDS from diagnosis through daily management for the whole family. #ehlersdanlos #EDS #geneticdisorder...
https://amazon.com/gp/product/B0CLWM1R99?tag=bblnk-20
#BookDiscovery #BookRecommendations #ReadingTime
https://amazon.com/gp/product/B0CLWM1R99?tag=bblnk-20
#BookDiscovery #BookRecommendations #ReadingTime
September 28, 2025 at 4:46 PM
Comprehensive family guide to Ehlers-Danlos Syndromes! 🧬 Understanding EDS from diagnosis through daily management for the whole family. #ehlersdanlos #EDS #geneticdisorder...
https://amazon.com/gp/product/B0CLWM1R99?tag=bblnk-20
#BookDiscovery #BookRecommendations #ReadingTime
https://amazon.com/gp/product/B0CLWM1R99?tag=bblnk-20
#BookDiscovery #BookRecommendations #ReadingTime
대체 미국인들은
얼마나 가까운 친척관계에서
결혼이 가능한 걸까
동성동본 결혼 안 되었던 부분이 선조들의 예지력
아니겠지만🤣
.
As Korean, I found this especially interesting to me, because Korean has pretty strict rule about marriage and they used to be even stricter when it comes to marriage with relatives.
#consanguinity #geneticdisorder
얼마나 가까운 친척관계에서
결혼이 가능한 걸까
동성동본 결혼 안 되었던 부분이 선조들의 예지력
아니겠지만🤣
.
As Korean, I found this especially interesting to me, because Korean has pretty strict rule about marriage and they used to be even stricter when it comes to marriage with relatives.
#consanguinity #geneticdisorder
September 16, 2026 at 5:31 PM
대체 미국인들은
얼마나 가까운 친척관계에서
결혼이 가능한 걸까
동성동본 결혼 안 되었던 부분이 선조들의 예지력
아니겠지만🤣
.
As Korean, I found this especially interesting to me, because Korean has pretty strict rule about marriage and they used to be even stricter when it comes to marriage with relatives.
#consanguinity #geneticdisorder
얼마나 가까운 친척관계에서
결혼이 가능한 걸까
동성동본 결혼 안 되었던 부분이 선조들의 예지력
아니겠지만🤣
.
As Korean, I found this especially interesting to me, because Korean has pretty strict rule about marriage and they used to be even stricter when it comes to marriage with relatives.
#consanguinity #geneticdisorder
Comprehensive family guide to Ehlers-Danlos Syndromes! 🧬 Understanding EDS from diagnosis through daily management for the whole family. #ehlersdanlos #EDS #geneticdisorder...
https://amazon.com/gp/product/B0CLWM1R99?tag=bblnk-20
#BookAddict #LiteratureLover #BookClub
https://amazon.com/gp/product/B0CLWM1R99?tag=bblnk-20
#BookAddict #LiteratureLover #BookClub
August 3, 2025 at 6:58 AM
Comprehensive family guide to Ehlers-Danlos Syndromes! 🧬 Understanding EDS from diagnosis through daily management for the whole family. #ehlersdanlos #EDS #geneticdisorder...
https://amazon.com/gp/product/B0CLWM1R99?tag=bblnk-20
#BookAddict #LiteratureLover #BookClub
https://amazon.com/gp/product/B0CLWM1R99?tag=bblnk-20
#BookAddict #LiteratureLover #BookClub
Meet #MelanieGaydos, a striking #model who has made the most of her rare #GeneticDisorder zorz.it/UKxGD | #AdelaideRoss #UniqueLook #EctodermalDysplasia #StrikingFeatures #ModelingIndustry #BeautyStandard #StunningPhotos #CaptivatingPictures
February 26, 2025 at 5:34 PM
Meet #MelanieGaydos, a striking #model who has made the most of her rare #GeneticDisorder zorz.it/UKxGD | #AdelaideRoss #UniqueLook #EctodermalDysplasia #StrikingFeatures #ModelingIndustry #BeautyStandard #StunningPhotos #CaptivatingPictures