#orphandisease — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #orphandisease, aggregated by home.social.
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Natural History and Post-transplant Outcomes Among Patients with Kidney #LECT2 #amyloidosis.
This is our internal data about kidney function before diagnosis and after transplant in those #ALECT2 #orphandisease #kidneydisease
www.medrxiv.org/content/10.6...
Natural History and Post-trans... -
Natural History and Post-transplant Outcomes Among Patients with Kidney #LECT2 #amyloidosis.
This is our internal data about kidney function before diagnosis and after transplant in those #ALECT2 #orphandisease #kidneydisease
https://www.medrxiv.org/content/10.64898/2026.07.31.26359278v1
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CW: Illness
There’s a reasonable chance that I’ll never see mom again; she doesn’t want bedside visits and the sitting up days are growing too entirely rare
Can’t treat the orphan disease while she’s on chemo; can’t drop the chemo if she wants to breathe. There don’t seem to be options anymore
*I* would totally take the hospice route, but it’s not my journey to choose
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Herausforderung Seltene Erkrankungen: Diagnostik, Versorgung, Forschung und Kosten
Ab jetzt bis zum 23.10. kann man sich anmelden zum IQWiG-Herbst-Symposium am 24. und 25. November 2023 in Köln.
Es gibt Plätze vor Ort und im Livestream!
https://www.iqwig.de/presse/pressemitteilungen/pressemitteilungen-detailseite_100160.html
(Foto: Thomas Wolf, www.foto-tw.de, Hohenzollernbrücke Köln, CC BY-SA 3.0 )