Not a morning person and that will surprise no one that knows me. So why be conscious at 6:30am?

Chronic illness isn't glamorous. I'm apparently in a PNH flare, again. Woke up choking on spit. My blood disorder shut down my digestive system. Again.

So fun.

#pnh #chronicillness #disability

In PNH, Complement Fragments Clarify Inhibition but Fall Short as Biomarkers; LDH Still Superior Among complement breakdown fragments, Bb showed only a modest correlation with LDH, and sC5b-9 did not reliably track hemolysis.

Analysis of complement breakdown fragments can detect residual complement activation and pharmacologic inhibition in patients with
3paroxysmalNocturnalHemoglobinuria. Published in @rarediseaseadvisor.bsky.social.

https://bit.ly/3MV1UUk

#PNH

42 km pour les maladies rares : Gabrielle court le Marathon de Paris pour HPN France – Aplasie Médullaire 42 km pour les maladies rares : Gabrielle court le Marathon de Paris pour HPN France – Aplasie Médullaire

🏃♀️ Le 12 avril, Gabrielle courra le Marathon de Paris pour soutenir la recherche sur l’HPN et l'aplasie médullaire.
💙 Soutenir lacollecte de don : hpnfrance.com/2026/03/06/m...

#maladiesrares #recherche #santé #marathondeparis #solidarité #hpn #aplasiemedullaire #pnh #parismarathon

Listen, I don't get many times to celebrate, so I'm gonna take it.

#rarediseaseday #chronicillness #NORD #disability #PNH

Today, on #RareDiseaseDay, we stand together as a global community to raise awareness of PNH and the millions of people worldwide living with rare diseases. PNH is rare, but our community is strong.

Rare is many. Rare is powerful!

#RareDiseaseDay #PNH #PatientAdvocacy

Chasing the American dream is complicated with PNH Growing up, columnist Erin Fortin was intent on chasing the American dream. But her PNH diagnosis caused her to consider different paths.

Most people don't have to worry that supply chain disruptions will kill them.

I'm not that lucky. If my medication isn't reliably delivered on time, I bleed to death. In today's political climate, I do not get to feel safe.
#raredisease #pnh #chronicillness #disability
pnhnews.com/columns/chas...

the word rare is displayed in a rainbow of colors on a black background . ALT: the word rare is displayed in a rainbow of colors on a black background .

With all my current personal life drama, I almost forgot!

Happy rare disease month to me.

By some miracle, PNH didn't kill me last year, but it sure did give me a new (dis)respect for it.

#raredisease #chronicillness #PNH #disability #ParoxysmalNocturnalHemoglobinuria

Asahi Kasei Pharma Hosts Second Seminar for PNH Patients and Their Families Join the Second PNH Seminar hosted by Asahi Kasei Pharma on April 25, 2026, designed for patients and families dealing with this rare blood disorder.

Asahi Kasei Pharma Hosts Second Seminar for PNH Patients and Their Families #Japan #Osaka #PNH #Asahi_Kasei #Health_Seminar

MUC4 Mutations Linked to Elevated Risk for Thrombosis in Patients With PNH The incidence of thrombotic events was statistically significantly greater among patients with MUC4 gene mutations compared with those without MUC4 mutations (P =.003).

The presence of MUC4 genetic mutations significantly increases the risk for developing thromboses in individuals with #paroxysmalNocturnalHemoglobinuria. Published in @rarediseaseadvisor.bsky.social.

https://bit.ly/3Z2nnx1

#PNH

Case Report: Acute Tubular Necrosis With Underlying PNH A patient was eventually diagnosed with PNH, with acute tubular necrosis as her initial clinical symptom.

A young adult female patient was diagnosed with #AcuteTubularNecrosis with underlying paroxysmal nocturnal hemoglobinuria (#PNH), highlighting how renal involvement may be an initial manifestation of PNH.

Read more: https://bit.ly/3NQIUq5

#RareDisease #MedSky

a young girl in an orange dress is swinging on a rope in a field Alt: a young girl in an orange dress is swinging on a rope in a field

Before she dies, a former psychiatrist at a sanatorium admits to some dark truths about her time there, but not all. After her death, a phantom begins haunting her granddaughter, guiding her to the truth behind the walls of the institution in the Canadian woods.
#QuestPit #Q #PNH

a silhouette of a woman in a dark forest . Alt: a silhouette of a woman in a dark forest .

Before she dies, a former psychiatrist at a sanatorium admits to some dark truths about her time there, but not all. After her death, a phantom begins haunting her granddaughter, guiding her to the truth behind the walls of the institution in the Canadian woods. #QuestPit #Q #PNH

Pegcetacoplan Effective in Real-World Setting for CI-Naive, CI-Experienced PNH Patients Researchers compared the response to pegcetacoplan therapy at treatment initiation and at the time of surveying CI-experienced vs CI-naive patients.

Treatment with #Pegcetacoplan has demonstrated significant improvements in hematologic parameters in both #ComplementInhibitor (CI)-experienced and CI-naive patients with #PNH in real-world clinical settings across Europe and Canada.

Learn more: https://bit.ly/4a12G9s

MUC4 Mutations Linked to Elevated Risk for Thrombosis in Patients With PNH A mouse model of lower limb deep vein thrombosis confirmed the thrombotic tendency in PNH mice, along with the fact that MUC4 deficiency further promoted the thrombotic phenotype of the mice.

The presence of #MUC4 genetic mutations significantly increases the risk for developing thromboses in individuals with paroxysmal nocturnal hemoglobinuria (#PNH).

Read more: https://bit.ly/3NsmafQ

#RareDisease #ParoxysmalNocturalHemoglobinuria #MedSky

Merci à toutes celles et ceux qui font vivre notre association au quotidien 💙
Retour en images sur nos actions.

« Ensemble, nous sommes plus forts. »

🔗 Lien de l’association : hpnfrance.com

🎆 cap sur 2026 : hpnfrance.com/2026/01/01/c...

#HPN #aplasiemedullaire #pnh #solidarite #maladiesrares

KP104, a #monoclonal #antibody used to treat #PNH, continues to display strong clinical efficacy two years after treatment, with 100% of participants maintaining an Hb increase of at least 2 g/dL from baseline and 89% achieving Hb normalization by then: https://ow.ly/veiT50XNmTt
#HemeSky

On Universal Health Coverage Day, we stand for equal access to quality care for everyone with PNH. Early diagnosis, treatment, and support should be available to all 🌟 #UHC #PNH #HealthForAll

I'm on an immunosuppressant. After a quick cost/benefit analysis I decided to get a Covid booster this year. Three days later I was hospitalized from a #PNH flare and #AKI.

I'd do it again in a heartbeat. Zero regrets.

#Empaveli #paroxysmalnocturnalhemoglobinuria #chronicillness #disability #covid

#Haiti 🇭🇹: "Lanmò2Jou" Gang seized wreckage of a helicopter used by National Police ( #PNH ) and malfunctioned in Port-au-Prince ( #Pòtoprens ).

Some gang members are seemingly carrying a rare #Israel made 🇮🇱 IWI Galil ACE 21 carbine (captured from PNH) and #USA made 🇺🇸 M14 rifle.

an aerial view of a snowy area with buildings and trees in the background Alt: an aerial view of a snowy area with buildings and trees in the background

Before she dies, a former lead psychiatrist at a sanatorium admits to some dark truths about her time there, but not all. A phantom begins haunting her granddaughter, guiding her closer to the truth behind the institution's walls, deep in the Canadian woods.
#QuestPit #Q #PNH #M #R

Clockwise upper left: a girl dancing in the woods, a creepy house, a fire monster, creepy woods, a black bird and an abandoned factory.

IT x STRANGER THINGS x THE RIVERMAN: Two identical photos taken years apart send true crime fan Max on a quest to identify the girl in the photo while tangling with a eldritch horror released by crazed cult leader accused of murdering seven little girls. #YA #PNH #T #GhostPit

IT x STRANGER THINGS x THE RIVERMAN: Two identical photos taken years apart send true crime fan Max on a quest to identify the girl in the photo while tangling with a eldritch horror released by crazed cult leader accused of murdering seven little girls. #YA #PNH #T #PitDark

IT X THE WEIGHT OF BLOOD: When Max finds 2 identical photos, taken years apart, he embarks on a quest to unravel the mystery of the pics & their link to 7 missing girls while tangling w/ the eldritch horror their crazed cult leader murderer unleashed. #YA #PNH #T #PitDark

WOOLERS
When her parents take temporary jobs at a remote living history museum, 13-year-old Effie is thrilled about skipping the start of eighth grade—until she discovers the museum’s actors aren’t living at all, and she must save her family from becoming permanent exhibits. #GhostPit #Q #MG #PNH

Before she dies, a former psychiatrist at a sanatorium admits to some dark truths about her time there, but not all. After her death, a phantom begins haunting her granddaughter, guiding her to the truth behind the walls of the institution in the Canadian woods.
#PitDark #Q #PNH #PH #M

a black and white photo of a snowy forest Alt: a black and white photo of a snowy forest

Before she dies, a former psychiatrist at a sanatorium admits to some dark truths about her time there, but not all. After her death, a phantom begins haunting her granddaughter, guiding her to the truth behind the walls of the institution in the Canadian woods.
#GhostPit #Q #PNH #R

Successful MALS Surgery Reported in Patient With PNH and Aplastic Anemia Distinct perioperative challenges are seen in patients with PNH and aplastic anemia, which are associated with hemolysis, thrombosis, and cytopenias.

A patient in India who was diagnosed with comorbid #MALS, #PNH, and #AplasticAnemia has undergone successful surgery that involved robotic release of the median arcuate ligament.

Read more: https://bit.ly/47IlFF1

#RareDisease #MedSky #RareSky

Fabien - Un parcours face à l’hémoglobinurie paroxystique nocturne (HPN) Fabien - Un parcours face à l’hémoglobinurie paroxystique nocturne (HPN)

🎥«J’ai appris à avancer, pas à pas» – Fabien raconte son combat contre l’HPN.💉Fatigue, douleurs, errance diagnostique… et la force de l’alliance thérapeutique & du soutien de @HPNFranceAM .
📽 Son témoignage : hpnfrance.com/2025/10/12/f...
#HPN #AplasieMédullaire #MaladieRare #PNH

🔗 Explore CPX-6502 (tinyurl.com/wm9vz558) via the @emblebi Complex Portal - mapping all biologically functional protein complexes.

#GlobalPNHAwarenessDay #PNH #RareDisease #GPIAnchors #ComplementSystem #GpiGnT #ComplexPortal #EMBLEBI

🌟 Heute ist der weltweite PNH-Aktionstag!
Lasst uns das Bewusstsein für paroxysmale nächtliche Hämoglobinurie (PNH) schärfen, Patienten unterstützen und uns für den Zugang zu Behandlungen für alle einsetzen! 💙🩸

#PNHAwareness2025 #PNH #RareDisease #PatientSupport #DidYouKnow