Disease Spotlight

Being diagnosed with a rare disease is often a bolt from the blue, and while each person’s journey

Living with LHON: Individual struggles, common challenges

https://pharmaphorum.com/disease-spotlight/living-with-lhon-individual-struggles-common-challenges/

Disease Spotlight/ LHON Main/ Patients/ Views & Analysis/ Views and analysis

Living with LHON: Sight loss won’t stop James from seeing the world

Amanda Barrell LHON, Santhera 0 Comment

When he was first told he had LHON, a rare genetic disease that would rob him of his

Living with LHON: Sight loss won’t stop James from seeing the world

https://pharmaphorum.com/views-analysis-patients/living-with-lhon-sight-loss-wont-stop-james-from-seeing-the-world/

Disease Spotlight/ LHON Main/ Views and analysis

Living with LHON: Support and friendship fights fear and isolation

Amanda Barrell Arbeitskreis LHON, Christiane Trenkner, Leber's hereditary optic neuropathy, LHON, Santhera 0 Comment

When someone is told they have a rare disease – particularly one like LHON that strips people of

Living with LHON: Support and friendship fights fear and isolation

https://pharmaphorum.com/disease-spotlight/living-with-lhon-support-and-friendship-fights-fear-and-isolation/

LHON Main/ Spotlight

Diagnostic de la NOHL : sensibiliser le public à la souffrance invisible des patients

louise.bellamy@pharmaphorum.com Maryse Roger, NOHL, Ouvrir Les Yeux, Santhera 0 Comment

Maryse Roger a vécu de près la neuropathie optique héréditaire de Leber (NOHL). Elle a d’abord aidé ses

Diagnostic de la NOHL : sensibiliser le public à la souffrance invisible des patients

https://pharmaphorum.com/spotlight/diagnostic-de-la-nohl-sensibiliser-le-public-a-la-souffrance-invisible-des-patients/

Disease Spotlight/ LHON Main/ Views and analysis

Living with LHON: Adapting to sight loss at 15 years old

Amanda Barrell Ana Velosa, LHON, Santhera 0 Comment

When faced with a devastating diagnosis, a family has two choices – to give up or make it

Living with LHON: Adapting to sight loss at 15 years old

https://pharmaphorum.com/disease-spotlight/living-with-lhon-adapting-to-sight-loss-at-15-years-old/

Disease Spotlight/ LHON Main/ Views and analysis

Drawing strength from growing up with LHON

Amanda Barrell Fredrik Guzmán Lindemark, LHON, Santhera 0 Comment

With a successful music career already in the bag, 24-year-old Fredrik Guzmán Lindemark is now making his mark

Drawing strength from growing up with LHON

https://pharmaphorum.com/disease-spotlight/drawing-strength-from-growing-up-with-lhon/

Disease Spotlight/ DMD Main/ Views and analysis

Curing DMD: Travelling together to find a meaningful destination

Amanda Barrell disease, DMD, Duchenne muscular dystrophy, Duchenne Parent Project Spain, Joaquim Brites, Marisol Montolio 0 Comment

For many years, Duchenne muscular dystrophy (DMD) was something of a forgotten disease. The boys, and some girls,

Curing DMD: Travelling together to find a meaningful destination

https://pharmaphorum.com/disease-spotlight/dmd-main/curing-dmd-travelling-together-to-find-a-meaningful-destination/

LHON Main

Wegweiser für ein Leben mit LHON

Adam Jeffery ASANOL, LHON, Pedro García Recover 0 Comment

Wegweiser für ein Leben mit LHON Jeder Patient geht seinen eigenen Weg durchs Leben und versucht, mit den

Wegweiser für ein Leben mit LHON

https://pharmaphorum.com/disease-spotlight/lhon-main/wegweiser-fur-ein-leben-mit-lhon/

Disease Spotlight/ LHON Main

Établir la feuille de route pour vivre avec la NOHL

Adam Jeffery ASANOL, maladie rare, neuropathie optique héréditaire de Leber, NOHL, Pedro García Recover 0 Comment

Établir la feuille de route pour vivre avec la NOHL Chaque patient doit suivre son propre cheminement, en

Établir la feuille de route pour vivre avec la NOHL

https://pharmaphorum.com/disease-spotlight/lhon-main/etablir-la-feuille-de-route-pour-vivre-avec-la-nohl/

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