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Porphyria Awareness Week – Round Up Blog

Porphyria Awareness Week has given the team at emotive an opportunity to show our support for those touched by this debilitating Rare Disease as well as our enthusiasm for working in this field.   

Porphyria is a rare condition that is thought to affect around 1 in 75,000 people. The cause of this genetic disease involves a problem with the production of heme, a component in haemoglobin. The synthesis of heme involves 8 different enzymes and a deficiency of a specific enzyme determines the subtype of Porphyria. 

Subtypes can be separated into two main groups, labelled acute and cutaneous. Each subtype has unique manifestations, making accurate diagnosis challenging. The defect means there is a build-up of porphyrin, a chemical which links to haemoglobin, and high-levels are detrimental.  

Symptoms are broad and can vary dramatically in severity, often leaving doctors mystified whilst patients suffer. Our medical writing and creative teams collaborated to create an Infographic to better explain the disease

Over the past week, emotive wanted to spread the word about Porphyria to everyone we know and work with. We shared a series of patient and caregiver stories to help people understand what it’s like living with the disease, the journey to diagnosis and the experiences of carers. 

Midweek we went Purple for Porphyria in the office and made sure that even our team members who don’t work in this area had the chance to be involved.  

emotive is very proud to be working in the field of porphyria.  As a company we are committed to changing lives by helping global life science companies bring novel and innovative products to patients. We recognise that only true engagement can facilitate change and we use our combination of scientific, creative and technical expertise to stimulate optimal participation of all those in the care pathway.     

For more information on opportunities to work with emotive or to find out more about our client services email

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Last Updated: 23-Apr-2019