Patients Views & Analysis

Views & Analysis

Growing up different and not knowing why: My experience of r...

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

Views & Analysis

Electronic cigarette on ashtray, cigarette lighter and bottles with vape liquid within vapor on granite surface. Black background.

Cytisinicline - the solution to stop smoking?

Whether present in electronic or combustible cigarettes, nicotine is a highly addictive substance.

Views & Analysis

mapping the path to better communication outcomes

The power of communication: engaging diverse groups in healt...

Humans are diverse and communications to engage us need to be inclusive.

Patients

The hidden danger of isolated congenital asplenia

TEAM 4 Travis is an advocacy group with one objective – to ensure it doesn’t take an autopsy to diagnose isolated congenital asplenia.

Patients

The ‘failure’ of clinical trials in the search for a new effective treatment for a global pandemic

Patient involvement in trial design: looking to the future

COVID-19 has transformed the way we think about patient participation in trial design – but there are still many barriers to overcome in improving engagement.

Views & Analysis

How accidental advocacy is amplifying the GM1 voice

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

Growing up different and not knowing why: My experience of r...

Cytisinicline - the solution to stop smoking?

The power of communication: engaging diverse groups in healt...

The hidden danger of isolated congenital asplenia

Patient involvement in trial design: looking to the future

How accidental advocacy is amplifying the GM1 voice

Merck rare tumour drug Ezmekly backed for NHS use

Discover a new era of healthcare panel engagement: Grounded ...

Views & Analysis

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