What we do
To achieve our aims, we try to reach out to as many people as possible in order to improve understanding of the porphyrias, including:
- patients and relatives
- doctors and medical staff
- hospitals and research establishments
Some of the things we do are:
- Hold one or two open days/conferences per year for our members – these provide opportunities for patients to meet and talk with others affected by porphyria, as well as having scientific presentations from doctors, nurses and patients about living with porphyria and about the latest research that might affect porphyria patients’ lives.
- Publish two newsletters a year and design and publish various patient information leaflets and factsheets to encourage patients to be informed about their condition and assist in explaining about it to others.
- Run telephone and email helplines, as well as our own website.
- Monitor a Facebook page and recently started to use Twitter.
- Coordinate various fundraising efforts with places in the London Marathon, Ride London and the Great North Run to name just a few
- Support others who are fundraising independently in aid of the BPA.
- Source merchandise – to sell and give away at conferences and for our fundraisers (including specialised sportswear).
- Attend relevant meetings in the UK including BIPNET* and NAPS* – these meetings keep us informed about best practices and new developments in the field (which we pass on to our members), and help to strengthen relations and build networks with porphyria specialists around the UK.
- Attend meetings internationally including ICPP* and IPPN* – this helps us to keep up to date with the latest research in the field of porphyria and build international networks.
** See side bar for a glossary of terms.
Glossary of terms
British and Irish Porphyria Network: a professional forum for specialist clinicians and scientists in the porphyria field, working collaboratively to share expertise and promote best practice in the care of patients with all forms of porphyria.
National Acute Porphyria Service: established in April 2012. It is funded by the Department of Health to help patients with severe acute porphyria. NAPS centres: Cardiff and King’s (London) with Salford and Leeds as regional centres (NAPS Scotland established April 2016).
International Conference on Porphyrins and Porphyrias: this international medical conference and associated patient day presents a chance for all scientists, medical professionals and patient organisations working in the field of porphyria to present their work and discuss with others to enhance knowledge worldwide.
International Porphyria Patient Network: this is a venture by porphyria patient organisations worldwide to link together through an umbrella organisation. Together we all have a stronger voice in aspects such as research and access to new medications.