As reported by the Manila Times, the FDA has formally accepted uniQure’s biologics license application for ifezuntirgene inilparvovec (AMT-130), an experimental gene therapy being developed
My name is Jonathan Eskenas and I live in Los Angeles with my wife and our dogs. I’m an executive producer of television series and
As reported on PharmaBiz, a major UK breast cancer study has passed a significant recruitment milestone, with more than 1,000 patients now participating in research
In a collaborative effort between University College Institute (UCL) and the University of Cambridge, researchers have engineered personalized computational frameworks—often termed tumor “digital twins”—to forecast
As published in Sage Journals, researchers have developed an accessible, machine learning-driven histopathology workflow that enables quantitative evaluation of metabolic dysfunction-associated steatohepatitis (MASH) in laboratory
The Genomics England Research Study listed approximately two hundred rare treatable conditions of children five years old or younger. Genomics has had, and continues to
My name is Sami Yusuf Baker. I am 19 years old, and I live in a small village in the Kurdistan Region of Iraq. I
My name is Rim Wafaa Bendjaada. I am 22 years old, a rare disease and pulmonary hypertension advocate from Algeria, living with pulmonary veno-occlusive disease
Editor’s Note: The following is an excerpt from Bird’s Eye View: Stories of a Life Lived in Health Care by Sue Robins. I remember every single
As reported on Bioengineer and ScienMag, a new spatial transcriptomics study has provided fresh insight into how different regions of the liver are remodeled during
When life changes in a way we never wanted or expected, there are often two struggles taking place: the hardship itself and our struggle against
Editor’s Note: The following article was originally written and shared with us by Adriana Olivo, NP, Memorial Sloan Kettering Cancer Center. For many people with
Editor’s Note: The following story was originally written and shared with us by Holly M. LaPrade. Thirty years ago, a small army of doctors cautiously
Clear cell renal cell carcinoma (ccRCC) is the most common type of kidney cancer. It begins in the kidney’s filtering cells and gets its name
As reported on Pharmaceutical Technology, Alentis Therapeutics has expanded its efforts in claudin-1-targeted cancer therapeutics through a newly announced partnership with PinotBio, aimed at generating
As reported on Inside Precision Medicine, a large study from Denmark found that children conceived with certain assisted reproductive technologies had a higher relative rate
Final two-year data from the Phase 3 VISIONARY trial indicate that Voyxact (sibeprenlimab-szsi) may significantly slow progression of primary immunoglobulin A nephropathy (IgAN), preserving kidney
One of the most persistent hurdles in biology is the natural, age-related decline of female fertility. As women age, both the quantity and quality of
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#invisibledisabilities #marfansyndrome Marfanov SindromNeštetokrat sem se znašel v situaciji, ko sem moral pojasnjevati, zakaj ne morem nekaj narediti. Zakaj ne zmorem. Zakaj izpustim določene stvari. Zakaj potrebujem počitek, svoj mir, svoj ritem....
In velikokrat ni najtežje to, da nečesa ne (z) morem ampak, da moram še razlagati, se upravičevati, dokazovati, da je moje telo in moja realnost drugačna. Da tudi jaz živim svoje življenje, le na svoj način in po svojih zmožnostih.
Vsak nosi svoj nahrbtnik. Moje "zmorem" ni enako tvojemu "zmorem". In to je povsem v redu.
Tudi če se ne vidi na zunaj, to še ne pomeni, da ni resnično. Ni lenoba, ni pretiravanje, ni izgovor, je dejstvo. To je nevidna invalidnost. BISTVO JE OČEM NEVIDNO. In včasih res najbolj potrebujem malo več posluha, manj sodb in predvsem: več razumevanja, da vsak živi po svojih močeh.
Hvala vsem, ki ne sprašujete vedno "zakaj", ampak rečete "razumem". To mi pomeni več, kot si lahko predstavljate.
Naj ta zapis (spre) govori v imenu vseh bolnikov, kateri se borijo s posledicami NEVIDNE INVALIDNOSTI.
#redkebolezni #invalid #invalidnost #NevidnaInvalidnost #bolezen #ozavescanje #zivljenje #bolnik #marfanovsindrom #FBN1 #vezivnotkivo #EhlersDanlos #LoeytzSindrom #hrbtenica #skelet #srce #oko #aorta #zaklopke #Operacija #druzba #javnost #dusevnost #mentalnoZdravje #zakaj #razumevanje
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