Meet our supporters

As our charity has grown, we have been lucky enough to meet and foster relationships with a number of supporters. These individuals and organisations have offered their support to the British Porphyria Association in many different ways. We would like to recognise them here and thank them for their vital support. Their assistance enables us to continue helping porphyria patients and their families in the UK.

Daniel Wentzell and his team at Coterie Creative have supported the BPA with publishing guidance and expertise for many years. Twice a year, Daniel has expertly collated our newsletter into a professional document ready for printing. He has done this for more than 10 years – for no fee.

More recently, his company has also sponsored the printing of the newsletter, which is a vital source of information and porphyria knowledge for our members.

Recordati Rare Diseases (previously known as Orphan Europe) has been one of our longest standing supporters.

For numerous years they’ve sponsored our Open Days and AGM events. These events are vital to the education of patients and medical professionals, and offer a great avenue of support for all people connected to the porphyrias. Recordati are helping to support both of our 2019 patient events.

Alnylam Pharmaceuticals have supported the BPA in numerous ways. Alnylam provided a grant to update our website and make it more mobile friendly. They sponsored committee members to attend the International Congress on Porphyrins and Porphyrias. This helps the BPA to keep up to date with developments in the field of porphyria. It also enables us to foster vital relationships and networks with other international organisations.

Advocacy for Impact Grants is a Global Competitive Grants Program set up by Alnylam Pharmaceuticals. The BPA were delighted to be one of the 2018 Award Winners for our proposal to host the BPA 20th Anniversary Festival.

Clinuvel Pharmaceuticals Ltd recently awarded the British Porphyria Association a grant. We intend to use some of the grant to enable committee members with EPP to attend the international patient day and scientific conference. Their attendance will advance the UK knowledge on EPP research and foster important relationships with other international patient groups.

Some of the grant will also be used on pre and post marketing elements for the 20th Anniversary Festival event.