OMG sciencefromThe Washington Post3 weeks agoHow the race to invent a drug for one sick baby made medical historyKJ Muldoon was diagnosed with a severe genetic disorder, CPS 1 deficiency, leading to groundbreaking gene-editing treatment efforts.
Parentingfromwww.npr.org4 weeks agoFrom apps to gadgets, 'Second Life' considers how tech is changing having a babyThe emotional journey of expecting a child with a genetic disorder highlights the challenge of balancing hope and fear.
OMG sciencefromCbsnews1 month agoSouthern Minnesota woman believed to be the only known person with unnamed genetic disorderIris Enriquez exemplifies resilience as the only known person with her unnamed genetic disorder, teaching those around her to value life and love.
FilmfromNew York Post2 months agoPrince Frederik of Luxembourg 'couldn't get up by himself' before death at 22, says director: 'Really painful to watch'Filmmaker Mei Fa Tan shares her poignant experience while directing a short film about Prince Frederik, who lost his battle with PolG at a young age.
fromwww.dw.com2 months agoGermany newsLuxembourg's Prince Frederik dies of rare disease DW 03/10/2025
FilmfromNew York Post2 months agoPrince Frederik of Luxembourg 'couldn't get up by himself' before death at 22, says director: 'Really painful to watch'Filmmaker Mei Fa Tan shares her poignant experience while directing a short film about Prince Frederik, who lost his battle with PolG at a young age.
fromwww.dw.com2 months agoGermany newsLuxembourg's Prince Frederik dies of rare disease DW 03/10/2025
Medicinefromenglish.elpais.com3 months agoScience finds explanation for disease that leaves children frozen'Nora was diagnosed with Tango2 Deficiency Disorder after years of misdiagnosis, offering hope for her and others with rare conditions.
UK newsfromwww.bbc.com3 months agoMum fears daughter's rapid deterioration without drugThe NHS's potential removal of Brineura could lead to rapid deterioration in children like Beatrice Cieslik with Batten disease.