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The BPA are excited to announce that Clinuvel Pharmaceutics LTD have donated a further ‘huge’ batch of CYACÊLLE suncream for the BPA to share with those affected by any of the skin porphyrias, across the UK and Ireland. CYACÊLLE is a large particle (polychromatic photoprotection) sunscreen product that is described as “A broad spectrum SPF 50+ with photoprotection against UVB, UVA and HEV light, CYACÊLLE is water-resistant, dermatologist approved and formulated with 100% mineral UV filters.” for more info see clinuvel.com/photocosmetics/cyacelle/#section-next

We are currently awaiting a shipment into the UK. But, if you’d like one sending out (once they arrive), please order here.

We are asking for a donation of £5.00 to cover the BPA’s administration costs, including P&P, for sending the creams out to our members. If you would like more than one cream sending, please select the appropriate box(es) on the form. If you are facing hardship and need the creams to be sent out at no cost to you, please email us helpline@porphyria.org.uk

We’d love to be able to report back on the experience of this product for porphyria patients who experience phototoxic/photosensitive reactions. With this in mind, we hope that you will be happy to complete a survey - using the link/QR code that you will find on your letter within the box.


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Supporting

British Porphyria Association

The British Porphyria Association is committed to advocating for, supporting and educating porphyria patients, relatives and medical professionals, so as to improve the quality of life for those living with the different types of porphyria. We promote disease awareness and the advancement of research into new therapies.

Awareness is vital if we are to ensure quicker diagnosis and a better patient journey.

The porphyrias are a group of rare, mainly genetic, conditions that have life-limiting and sometimes life-threatening impacts on a patient’s life. Patients often experience exceptionally negative effects on their physical health, family and social relationships, financial stability and psychological and emotional wellbeing. By providing families with the tools and resources to be informed about their condition, we can help to improve the lives of those affected.

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