Living with LHON: Sight loss won’t stop James from seeing the worldWhen he was first told he had LHON, a rare genetic disease that would rob him of his Share XLiving with LHON: Sight loss won’t stop James from seeing the worldhttps://pharmaphorum.com/views-analysis-patients/living-with-lhon-sight-loss-wont-stop-james-from-seeing-the-world/
Living with LHON: Support and friendship fights fear and isolationWhen someone is told they have a rare disease – particularly one like LHON that strips people of Share XLiving with LHON: Support and friendship fights fear and isolationhttps://pharmaphorum.com/disease-spotlight/living-with-lhon-support-and-friendship-fights-fear-and-isolation/
Living with LHON: Adapting to sight loss at 15 years oldWhen faced with a devastating diagnosis, a family has two choices – to give up or make it Share XLiving with LHON: Adapting to sight loss at 15 years oldhttps://deep-dive.pharmaphorum.com/magazine/pharma-research-rare-diseases/living-lhon-sight-loss-santhera/
Diagnostic de la NOHL : sensibiliser le public à la souffrance invisible des patientsMaryse Roger a vécu de près la neuropathie optique héréditaire de Leber (NOHL). Elle a d’abord aidé ses Share XDiagnostic de la NOHL : sensibiliser le public à la souffrance invisible des patientshttps://pharmaphorum.com/spotlight/diagnostic-de-la-nohl-sensibiliser-le-public-a-la-souffrance-invisible-des-patients/
Living with LHON: Adapting to sight loss at 15 years oldWhen faced with a devastating diagnosis, a family has two choices – to give up or make it Share XLiving with LHON: Adapting to sight loss at 15 years oldhttps://pharmaphorum.com/disease-spotlight/living-with-lhon-adapting-to-sight-loss-at-15-years-old/
Drawing strength from growing up with LHONWith a successful music career already in the bag, 24-year-old Fredrik Guzmán Lindemark is now making his mark Share XDrawing strength from growing up with LHONhttps://pharmaphorum.com/disease-spotlight/drawing-strength-from-growing-up-with-lhon/
New support group will help families adapt to LHONPersonal experience of helping her son juggle sight loss and adolescence means Francesca Müeller understands all too well Share XNew support group will help families adapt to LHONhttps://pharmaphorum.com/disease-spotlight/lhon-main/new-support-group-will-help-families-adapt-to-lhon/
Adaptations and positivity are key to living in the light with LHON sight lossIt took 30 years for Krister Inde to find out the visual impairment that developed when he was Share XAdaptations and positivity are key to living in the light with LHON sight losshttps://pharmaphorum.com/disease-spotlight/adaptions-and-positivity-are-key-to-living-in-the-light-with-lhon-sight-loss/
DMD campaigners: Advocating for changeThe internet and social media are often heralded as a panacea for rare disease patients and their carers Share XDMD campaigners: Advocating for changehttps://pharmaphorum.com/disease-spotlight/dmd-main/dmd-campaigners-advocating-change/
