Cardiff porphyria service have a new website 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.
RareDiseases Porphyria web-site
Can we strongly recommend the RareDiseases Porphyria web-site.
It is at: www.rareconnect.org/en/community/porphyria
Posts there will be answered promptly and reliably.
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 website: web.uct.ac.za/depts/porphyria/
Saneline is a national telephone helpline for those with mental health needs, their families and friends. Trained volunteers, support by experienced coordinators, 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 website is www.cafamily.org.uk.
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 website 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 and may be of interest to those suffering with EPP. 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: www.xpsupportgroup.org.uk
Kids Aware is an organisation to support families with disabled children. They can supply useful disability resource manuals. Their web page is at:www.kidzaware.co.uk
Genetic Alliance UK
BPA is a member of the Genetic Alliance UK, which covers all illnesses with genetic links.
There are two rare drug companies that we have links with, as they provide drugs for those with porphyria: