Our primary aim is to support and educate patients, relatives and medical professionals about the porphyrias, so as to improve the lives of those living with the effects of the conditions. Additionally, we aim to promote research into this group of rare conditions.
The ‘porphyrias’ are a group of rare disorders that are usually inherited. They are broadly separated into acute and cutaneous (skin) depending on the types of symptoms suffered. Learn more about the porphyrias.
Although the disorders can in some cases be very severe and are often portrayed in a dismal light, there are many reasons to be optimistic. With the right information and advice, many people can continue to live life to the full.
Early diagnosis is vital if we are to improve the quality of life for those affected by it.
- Improve understanding of the porphyrias.
- Educate patients and their families about their condition.
- Provide an emotional support system for patients and their families.
- Provide helpful contacts with doctors and specialists.
- Enable further understanding for doctors and other healthcare professionals.
- Provide a grant/aid fund so that members can apply for help with certain costs incurred because of their porphyria.
- Keep patients up to date with new research.
- Provide funding for new research and encourage research establishments to consider porphyria for research.
- Raise awareness of the porphyrias and ensure that the portrayal is always accurate.
Read more about what we do to achieve these aims.