Growing up different and not knowing why: My experience of rare vascular disorder KTSProtracted diagnostic odysseys don’t only block access to rare disease treatments, they also leave people facing emotional turmoil Share XGrowing up different and not knowing why: My experience of rare vascular disorder KTShttps://pharmaphorum.com/views-and-analysis/growing-up-different-and-not-knowing-why-my-experience-of-rare-vascular-disorder-kts/
The hidden danger of isolated congenital aspleniaTEAM 4 Travis is an advocacy group with one objective – to ensure it doesn’t take an autopsy Share XThe hidden danger of isolated congenital aspleniahttps://pharmaphorum.com/patients/shining-a-light-on-the-hidden-danger-of-isolated-congenital-asplenia/
Focus on Rare: the invisible burden of rare diseasesEmma Sutcliffe from NexGen Healthcare Communications looks at how patient insights can bring the invisible challenges of living Share XFocus on Rare: the invisible burden of rare diseaseshttps://deep-dive.pharmaphorum.com/magazine/research-and-development-2021/focus-on-rare-the-invisible-burden-of-rare-diseases/
How accidental advocacy is amplifying the GM1 voiceRare disease families need to stand up and be counted if they want things to change said mum Share XHow accidental advocacy is amplifying the GM1 voicehttps://pharmaphorum.com/views-and-analysis/rare-disease-advocacy-is-amplifying-the-gm1-voice/
Common but not normal: It’s time to talk about maternal mental healthAs part of our Patients Insights series, the founder and CEO of Motherhood Understood shares her experience of Share XCommon but not normal: It’s time to talk about maternal mental healthhttps://pharmaphorum.com/views-analysis-patients/common-but-not-normal-its-time-to-talk-about-maternal-mental-health/
Education and empowerment would provide more equal access to careElla Balasa says she owes her life to the experimental phage therapy she was able access in no Share XEducation and empowerment would provide more equal access to carehttps://pharmaphorum.com/views-analysis-patients/education-and-empowerment-would-provide-more-equal-access-to-care/
Sharing experiences to level the healthcare playing fieldAmanda Barrell speaks to Alfred Samuels on his experience of prostate cancer and diversifying clinical trials to include Share XSharing experiences to level the healthcare playing fieldhttps://pharmaphorum.com/views-analysis-oncology/sharing-experiences-to-level-the-healthcare-playing-field/
Pharma needs to adapt its communications or be left behindAs the world continues to grapple with the ongoing impact of coronavirus, the healthcare industry has taken centre-stage, Share XPharma needs to adapt its communications or be left behindhttps://pharmaphorum.com/views-analysis-sales-marketing/pharma-adapt-communications/
Ring 20: Could the rare disease get left behind by next-generation gene sequencing?Ring Chromosome 20 Syndrome, or (R)20, is an ultra-rare form of epilepsy with a devastating impact – yet Share XRing 20: Could the rare disease get left behind by next-generation gene sequencing?https://pharmaphorum.com/views-analysis-patients/ring-20-could-the-rare-disease-get-left-behind-by-next-generation-gene-sequencing/
