There are many other organisations that are relevant to those with porphyria, many of which we work closely with.
UK porphyria centres: We have good contacts with the UK porphyria medical centres of expertise. We recommend all patients with active porphyria to be referred to one of these centres.
Other organisations in the UK: There are quite a number of other organisations in the UK which can offer help to those with porphyria. Links to them are included.
Porphyria centres in other countries: Please find a list of corresponding porphyria centres in other countries.
European Porphyria Initiative: A major source of information on porphyria is the European Porphyria Initiative website.
Climb supports all rare metabolic diseases in the UK, and helped set up the BPA over 15 years ago. They provide information material both specific to porphyria, and useful general information.
International patient organisations: There are patient support organisations in many other countries and we try to keep in touch with each other.
Can we also strongly recommend the Rare Connect porphyria website. It is at: www.rareconnect.org/en/community/porphyria. Posts there will be answered promptly and reliably. Rare Connect is an international patient-led initiative. Patient organisations partner and coordinate together to create communities and provide moderators from within their network.