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.

The National Lottery Community Fund has helped to make a huge difference to our porphyria community. We’re one of thousands of projects funded by National Lottery players. Thank you.

To see what an impact your contribution to good causes made check out the Connect Alfresco event that National Lottery funding supported in 2022.

Disc Medicine have chosen to support the British Porphyria Association through a variety of ways. Most recently they provided a grant to support our 2024 activities, which amongst other things includes a patient conference in conjunction with a clinician-led annual conference, raising awarenes of the porphyrias through campaigns around Rare Disease Day and Global Porphyria Day and enabling EPP patients to take part in an outdoor activity day.

Mitsubishi Tanabe Pharma America have been active supporters of the British Porphyria Association in recent years. Most recently providing a grant to support all of our 2024 activities, which amongst other things includes a patient conference in conjunction with a clinician-led annual event, raising awarenes of the porphyrias through campaigns around Rare Disease Day and Global Porphyria Day and enabling EPP patients to take part in activities that wouldn’t usually be possible for them.

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 have supported the British Porphyria Association over recent years with numerous grants. These have been used to enable Patient Information Days alongside medical professionals, travel to attend the international patient day and scientific conference, advance the UK knowledge on EPP research and foster important relationships with other international patient groups.

More recently they have provided CYACELLE sunscreen products for EPP patients to test and feedback on.

SSIEM is the Society for the Study of Inborn Errors of Metabolism. The aim of the Society is to foster the study of inherited metabolic disorders and related topics. SSIEM offer a number of financial support awards, grants and scholarships, including an initiative for patient organisations and support groups who represent more than 50 families with a rare IEM to apply for modest financial support for their events or parent/carer projects. We were successful in securing a grant in 2024 to contribute to the Alfresco Residential event for young people with EPP.

Alpkit Foundation contributed £500 to a two-day activity package for three EPP patients for the Connect Alfresco event. Our project aims to remove barriers to being in nature and enable our EPP community to experience the mental and physical benefits of being outdoors.

Alpkit is an outdoor company that makes and sells technical outdoor equipment and bikes to help people go nice places and do good things. They think getting outdoors is amazing too, which is why they put 1% of sales into the Alpkit Foundation, focused on supporting grass roots and direct action causes.

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.

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.

The Tudor Trust makes grants to smaller community-led groups that support people at the margins of society.

In 2021, they provided the BPA with a grant to support the mental health and wellbeing of porphyria patients. This was used to provide wellbeing sessions at events and counselling services to patients in need.