British 
Useful Web Pages
To search for information on porphyria, including sites in other languages, try a range of spellings for porphyria: porfiria, porfyrier, porfyria and porphyria. All are correct in one or more languages!
Safe Drugs List
A printable lists of safe drugs that can be used by a patient with Acute Porphyria can be found on the Welsh Medicines Information Centre site
A list of both safe and unsafe drugs can be found on the European Porphyria Initiative site
A full list of drugs, and the best view of their safety (on a 5-point scale) can be found at www.drugs-porphyria.com
Cardiff Porphyria Service
Cardiff Porphyria Service have a new web-site at www.cardiff-porphyria.org
This is one of the key centres for porphyria testing and advice in the UK, and the only centre to do genetic testing on confirmed porphyria patients.
Climb
CLIMB - Children living with Metabolic disorders - covers unusual metabolic problems, including porphyria. They helped start up the British Porphyria Association.
CLIMB is committed to fighting metabolic diseases through research, awareness and support. They are the UK 's only dedicated organisation to provide advice, information and support on all metabolic diseases to children, young adults, families, carers and professionals. Their aim is to ensure the best possible quality of life for children, young people and families affected by metabolic disease and alleviate their suffering with the ultimate aim of prevention and cure.
They can be contacted on 0800 652 3181 or at www.climb.org.uk
European Porphyria Initiative
The mission of the European Porphyria Initiative (EPI) is to present an up to date approach to the understanding of porphyria, focusing in particular on the prevention and treatment of acute attacks; and to provide information and support to families affected by porphyria; and to support and encourage medical research.
EPI was formed in order to compare experience between countries, attempt to develop a common approach to the management of these diseases and to facilitate international collaborative clinical research and development. The first phase of the project, has been undertaken by a steering group including several UK specialist consultants.
They can be contacted at www.porphyria-europe.com
Other National Porphyria Organisations
The following organisations have web sites in English:
The Canadian Porphyria Foundation has a useful web-site: www.cpf-inc.ca
The American Porphyria Foundation has a very extensive web-site, including a section for medical staff: www.porphyriafoundation.com
The Australian Porphyria Association is at www.porphyria-australia.org
Dutch EPP Foundation English home page: www.epp.info/Engels/Index%20Engels.htm
The following sites have web in their own language:
Swedish Porphyria Association: home.swipnet.se/rmp
Norway : Norsk Porfyriforening: www.porfyri.no
Porphyria Association Denmark : www.porfyriforeningen.dk
Italian Porphyria Association: www.amapo.it
Dutch EPP Foundation: www.epp.info
French Centre for Porphyria: www.porphyries.com.fr
EPP Germany (who also cover other types of porphyria) www.epp-deutschland.de
University of Cape Town , Porphyria Service
South Africa has the highest incidence of porphyria in the world. The University of Cape Town has a longstanding interest in this interesting condition, and has a good web site: web.uct.ac.za/depts/porphyria/ .
Lists of Porphyria links
There are very extensive links to porphyria information on the web at the following sites:
By George Karakatsanis, Dermatologist, Thessaloniki , Greece : www.edae.gr/porphyria.html
Birth Disorder Information directory - Porphyria page: www.bdid.com/porphyria.htm
Saneline
Saneline is a national telephone help line for those with mental health needs, their families and friends. Trained volunteers, support by experienced co-ordinators, able to to offer support and understanding to the caller: They have a unique national database which gives details of mental services, selected by location and type of service according to the caller's needs. They can be contacted on 0845 7678000 Or at www.sane.org.uk
Contact a Family
Contact a Family are a charitable organisation who can offer advice and information on all issues affecting families of children with disabilities, special needs, or rare disorders. They have information on support groups, medical information, health, special education needs, respite and benefits.
They can be contacted on 0808 808 3555 , this is a freephone helpline operated between 10am and 4pm Monday to Friday, or 5.30 to 7.30pm on Mondays.
Their web-site is www.cafamily.org.uk .
Neuropathy Trust
The Neuropathy Trust offers emotional support to people affected by Peripheral Neuropathy. Some Porphyria patients may be affected by peripheral neuropathy in the form of weakness, paralysis, pins and needles, numbness, burning sensations, and manual dexterity problems. They are unable to offer medical advice. Their web site is www.neurocentre.com, and their contact telephone number is 01270 611 828.
XP Support Group
The XP Support Group is a UK charitable Trust founded in 1999 by parents of a child with Xeroderma Pigmentosum. It aims to relieve the needs of persons with XP and other related conditions and their families. The Group raises funds for research, gives grants for UV protective equipment and products, assists families to attend Camp Sundown or respite in a protective environment.
Their web page is at: http://www.xpsupportgroup.org.uk/