Building our own community for an ultra-rare diseaseBo Bigelow shares the story of his daughter Tess, who has an ultra-rare genetic disorder with only 51 Share XBuilding our own community for an ultra-rare diseasehttps://pharmaphorum.com/views-and-analysis/building-our-own-community-for-an-ultra-rare-disease/
Time to build evidence for patient involvement in researchPatient and public involvement (PPI) may be increasingly seen as the “right thing to do”, but without systematic Share XTime to build evidence for patient involvement in researchhttps://pharmaphorum.com/views-analysis-patients/time-to-build-evidence-for-patient-involvement-in-research/
Lung cancer’s patient information gap: the pharmaphorum podcastFor episode 13 of the pharmaphorum podcast podcast I went to AstraZeneca’s London base to meet Paul Naish, Share XLung cancer’s patient information gap: the pharmaphorum podcasthttps://pharmaphorum.com/podcast/lung-cancers-patient-information-gap
Understanding muscular dystrophyChris Anselmo, who has a rare form of muscular dystrophy, hopes to educate pharma on the patient journey Share XUnderstanding muscular dystrophyhttps://pharmaphorum.com/views-analysis-patients/understanding-muscular-dystrophy/
Making patient involvement meaningfulTrue public and patient involvement in research needs to be more than just a box ticking exercise – Share XMaking patient involvement meaningfulhttps://pharmaphorum.com/views-analysis-patients/making-patient-involvement-meaningful/
Working together to embed public involvement in researchAmanda Barrell speaks to the ABPI deputy chief scientific officer Sheuli Porkess and the NIHR’s Simon Denegri at the Share XWorking together to embed public involvement in researchhttps://pharmaphorum.com/views-analysis-patients/abpi-working-together-to-embed-public-involvement-in-research/
There’s no I in T.E.A.M when it comes to healthcareAfter being diagnosed with a rare non-malignant brain tumour, Claire Snyman has dedicated herself to inspiring people to Share XThere’s no I in T.E.A.M when it comes to healthcarehttps://pharmaphorum.com/views-analysis-patients/theres-no-i-in-t-e-a-m-when-it-comes-to-healthcare/
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/
Patient Insights: Severe psoriasis & eczemaHoward Chang has lived with severe psoriasis and atopic dermatitis for almost 40 years since childhood. Now a Share XPatient Insights: Severe psoriasis & eczemahttps://pharmaphorum.com/views-analysis-patients/patient-insights-severe-psoriasis-eczema/
