PXE Links

 

www.napxe.org

Website of the National Association for PXE, based in St. Louis, Missouri, USA.

www.rnib.org.uk

RNIB offers support and advice to blind and partially sighted people in the UK'

www.maculardisease.org

The Macular Disease Society is a self-help society for those suffering from any of the eye conditions encompassed by the overall name of Macular Disease.

www.medicalert.org.uk

MedicAlert® is the only non-profit making, registered charity providing a life-saving identification system for individuals with hidden medical conditions and allergies.

This takes the form of body-worn bracelets or necklets (known as MedicAlert Emblems) bearing the MedicAlert symbol on the disc and supported by a 24 hour emergency telephone service.

Each member receives an Emblem that is engraved with the wearer's main medical condition(s) or vital details, a personal ID number and a 24 hour emergency telephone number which accepts reverse charge calls that allows emergency and medical professionals to access their details from anywhere in the world in over 100 languages.

www.geneticalliance.org.uk

Is the national charity of patient organisations with a membership of over 140 charities supporting all those afffected by genetic disorders. Seeks to improve the lives of people affected by genetic conditions by ensuring that high quality services and information are available to all who need them.

http://www.justgiving.com

If you fancy doing something wild to raise awareness and funds e.g. a skydive, here is the place to sign up and ask people for their help in supporting your cause.  Don'f forget to let us know so that we can tell people about it here on the PiXiE website.

 

If you know of any other useful information on the Web, please let us know so we can include links here.