Minnesota family worried as ICE detains man with rare disease The loved one is 32-year-old Hani Duglof, who is now being treated at M Health Fairview Southdale Hospital while still in ICE custody, after his family says he could not safely remain in a detention f...

#ICE #DHS #HaniDuglof #RDEB #RareGeneticDisease #ICECuffedHisAnklesWhileHeIsInHospitalBed #Minnesota #Libya

KSTP - Twin Cities - Minnesota

kstp.com/kstp-news/to...

The Tree Man Syndrome: When Human Skin Turns into Bark 🌳 Tree Man Syndrome: When the Skin Becomes Bark(Epidermodysplasia Verruciformis)There exists a disea

www.myscrappydays.com/news.php?slu... — 🌳 Tree Man Syndrome: When the Skin Becomes Bark(Epidermodysplasia Verruciformis)There exists a disea… #TreeManSyndrome #EpidermodysplasiaVerruciformis #Raregeneticdisease #Humanskinbark #HPVinfection #Incurableskincondition #Humanmetamorphosis

SIDB

🚨Fantastic PhD opportunity for Autumn 2025 with our colleague Rebekah Tillotson @uoe-igc.bsky.social, asking whether ATRX syndrome is treatable:
sidb.org.uk/phds/tillots...
Please share 🙏
#epigenetics #raregeneticdisease #chromatinopathies

All I've been able to gather so far is that you cannot lifestyle your way out of a #RareGeneticDisease that you were born with & there's no magic oil, pill, patch, food, or abstinence that will change things. I feel like a ticking time bomb & need more info to get these thoughts to calm down.

I'm in need of learning more about a #RareGeneticDisease if anyone is willing to share. Feels like a long shot. I'm not finding much current info on #PolycysticLiverDisease so I'm feeling isolated till I can see a specialist. Referral is taking too long. + #disability