Aims:
To reach out to as many people as possible; patients, doctors, hospitals and research establishments in order to improve the understanding of this condition.
Services provided:
Early diagnosis is vital to improve the quality of life for those affected by it. Some of the activities underway and in the pipeline are:
- Distribution of newsletters twice a year to all people on our database, including patients, doctors, health authorities and other interested parties
- Distribution of patient booklets / drug lists
- Distribution of posters to hospitals
- Distribution of articles on all types of Porphyria for use by those with the condition
- Provision of support through meetings, counselling, and the dissemination of advice and information
- Provide patients and GP’s with details of doctors specialising in Porphyria
- Maintain contact with other Porphyria support groups in other countries to share information and recent developments in research and treatments
- Organise fundraising events and sponsorship to enable adequate resources for continued support, advice, information, and to aid research and education.
Additional information:
Porphyria is a fairly uncommon condition. It is a rare hereditary disorder of haemoglobin metabolism causing mental disturbance, extreme sensitivity to light and excretion of dark pigments in the urine.
Address
136 Devonshire Rd
Durham City
DH1 2BL
Website: http://www.porphyria.org.uk/
Email: helpline@porphyria.org.uk
Helpline number: 0300 30 200 30