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/
Increase collaboration to widen access to DMD drugs, trials and careWhen it comes to fighting a rare disease like Duchenne muscular dystrophy (DMD), it’s a matter of strength Share XIncrease collaboration to widen access to DMD drugs, trials and carehttps://pharmaphorum.com/disease-spotlight/increase-collaboration-to-widen-access-to-dmd-drugs-trials-and-care/
Living with LHON: Blindness doesn’t mean losing sight of your dreamsLosing your sight is every bookworm’s worst nightmare, but former English teacher Paula Morandi has not let her Share XLiving with LHON: Blindness doesn’t mean losing sight of your dreamshttps://pharmaphorum.com/disease-spotlight/living-with-lhon-blindness-doesnt-mean-losing-sight-of-your-dreams/
Finding the roadmap for living with LHONEvery patient faces their own journey through life, learning about their condition with the best tools available to Share XFinding the roadmap for living with LHONhttps://pharmaphorum.com/disease-spotlight/finding-the-roadmap-living-with-lhon/
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/
Parenting as a DMD patientParenting as a DMD patient The sleepless nights and steep learning curve that will be familiar to any Share XParenting as a DMD patienthttps://pharmaphorum.com/views-analysis-digital/parenting-as-a-dmd-patient/
He ain’t heavy – learning about a sibling’s DMD diagnosisIt’s common for patients to want to know more about what’s causing them to be ill and their Share XHe ain’t heavy – learning about a sibling’s DMD diagnosishttps://pharmaphorum.com/views-and-analysis/learning-sibling-dmd-diagnosis/
LHON diagnosis: Opening peoples’ eyes to the invisible suffering of LHON patientsMaryse Roger has firsthand experience of Leber’s hereditary optic neuropathy (LHON), having first assisted her two brothers as Share XLHON diagnosis: Opening peoples’ eyes to the invisible suffering of LHON patientshttps://pharmaphorum.com/views-analysis-digital/lhon-diagnosis-invisible-suffering-lhon-patients/
