patient insights Archives -

Protracted diagnostic odysseys don’t only block access to rare disease treatments, they also leave people facing emotional turmoil

Growing up different and not knowing why: My experience of rare vascular disorder KTS

https://pharmaphorum.com/views-and-analysis/growing-up-different-and-not-knowing-why-my-experience-of-rare-vascular-disorder-kts/

Patients/ Views & Analysis/ Views and analysis

The hidden danger of isolated congenital asplenia

Amanda Barrell isolated congenital asplenia, patient insights, TEAM 4 Travis 0 Comment

TEAM 4 Travis is an advocacy group with one objective – to ensure it doesn’t take an autopsy

The hidden danger of isolated congenital asplenia

https://pharmaphorum.com/patients/shining-a-light-on-the-hidden-danger-of-isolated-congenital-asplenia/

Deep Dive/ R&D/ Views & Analysis/ Views and analysis

Focus on Rare: the invisible burden of rare diseases

mike.hammerton@pharmaphorum.com Deep Dive, Emma Sutcliffe, Nexgen Healthcare Communications, patient insights, R&D, Research and Development 2021 0 Comment

Emma Sutcliffe from NexGen Healthcare Communications looks at how patient insights can bring the invisible challenges of living

Focus on Rare: the invisible burden of rare diseases

https://pharmaphorum.com/r-d/views-analysis-r-d/focus-on-rare-the-invisible-burden-of-rare-diseases/

Patients/ Views & Analysis/ Views and analysis

How accidental advocacy is amplifying the GM1 voice

Amanda Barrell GM1 gangliosidosis, patient insights, Rare diseases 0 Comment

Rare disease families need to stand up and be counted if they want things to change said mum

How accidental advocacy is amplifying the GM1 voice

https://pharmaphorum.com/views-and-analysis/rare-disease-advocacy-is-amplifying-the-gm1-voice/

Patients/ Views & Analysis/ Views and analysis

Common but not normal: It’s time to talk about maternal mental health

Amanda Barrell Motherhood Understood, patient insights, postpartum depression 0 Comment

As part of our Patients Insights series, the founder and CEO of Motherhood Understood shares her experience of

Common but not normal: It’s time to talk about maternal mental health

https://pharmaphorum.com/views-analysis-patients/common-but-not-normal-its-time-to-talk-about-maternal-mental-health/

Patients/ Views & Analysis/ Views and analysis

Education and empowerment would provide more equal access to care

Amanda Barrell cystic fibrosis, patient insights, Trikafta 0 Comment

Ella Balasa says she owes her life to the experimental phage therapy she was able access in no

Education and empowerment would provide more equal access to care

https://pharmaphorum.com/views-analysis-patients/education-and-empowerment-would-provide-more-equal-access-to-care/

Oncology/ Patients/ Views & Analysis/ Views & Analysis/ Views and analysis

Sharing experiences to level the healthcare playing field

Amanda Barrell BAME, clinical trials, diversity and inclusion, patient insights, Prostate cancer 0 Comment

Amanda Barrell speaks to Alfred Samuels on his experience of prostate cancer and diversifying clinical trials to include

Sharing experiences to level the healthcare playing field

https://pharmaphorum.com/views-analysis-oncology/sharing-experiences-to-level-the-healthcare-playing-field/

Sales and Marketing/ Views & Analysis/ Views and analysis

Pharma needs to adapt its communications or be left behind

mike.hammerton@pharmaphorum.com COVID-19, Medical affairs, medical communications, patient insights 0 Comment

As the world continues to grapple with the ongoing impact of coronavirus, the healthcare industry has taken centre-stage,

Pharma needs to adapt its communications or be left behind

https://pharmaphorum.com/views-analysis-sales-marketing/pharma-adapt-communications/

Patients/ Rare diseases/ Views & Analysis/ Views and analysis

Ring 20: Could the rare disease get left behind by next-generation gene sequencing?

mike.hammerton@pharmaphorum.com Exploring Rare Diseases, patient insights, Rare diseases, Ring 20 Research and Support, Ring Chromosome 20 syndrome 0 Comment

Ring Chromosome 20 Syndrome, or (R)20, is an ultra-rare form of epilepsy with a devastating impact – yet

Ring 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/

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