International Sites

Retina International

Retina International is a good starting point for the rarer retinal conditions.  In addition to retinitis pigmentosa, their website has information on Usher Syndrome, Stargardt, Leber Congenital Amaurosis, choroideremia, Bardet-Biedl, Refsum, and other rare disorders. 

Their Home Page lists member organisations around the world.  A number of these have linked websites with information about eye conditions, treatments, research, and adjusting to reduced vision.  For example:

  • Retina Australia's section on retinitis pigmentosa has illustrated information on genetic inheritance, and the Usher Syndrome section has an illustrated explanation of ear anatomy and physiology.  Their “Living with Retinal Dystrophies” page has information on young people’s issues and a guide for parents.
  • Fighting Blindness Ireland has easy-to-read information on a range of topics. Along with macular degeneration, and retinitis pigmentosa and the rarer retinal disorders, there are articles on flashes and floaters, macular hole, retinal tear/detachment, pathological (degenerative) myopia and a number of other eye conditions.

We’ve picked out two English language sites as examples, but information in a variety of languages is on other members’ sites.  And if you visit Retina Finland’s site and click to convert the Home Page to English (top right hand corner) you can access their informative and entertaining publication "Walking Hats and Other Anecdotes related to Retinitis".

RNIB (UK)

The Royal National Institute of Blind People (UK) has an Eye Health section with a comprehensive alphabetical guide to eye conditions including Charles Bonnet Syndrome (visual hallucinations associated with sight loss), plus information on “Looking after Your Eyes” with articles about nutrition and the eye.

NEI (USA)

The National Eye Institute, National Institutes of Health  is the major sponsor of vision research in the United States. Their site has an A – Z of eye topics, with information under age-related macular degeneration about their Age-Related Eye Disease Study (AREDS) and its follow-up (AREDS2). There are also research updates, downloadable education resources, and a monthly on-line newsletter for the general reader.

AMD Alliance International

The AMD Alliance International is based in Canada, with more than 60 member organisations worldwide. Their site has comprehensive information on age-related macular degeneration (AMD), including risk factors, treatments and clinical trials, nutrition and vitamin supplements, adjusting to vision loss, personal experiences, and lots more.

MD Foundation (Australia)

The MD Foundation has a range of downloadable publications on macular degeneration, with detailed information also available in Arabic, Chinese, Greek, Italian and Vietnamese.

Their Low Vision Guide has coping strategies and tips that would be helpful to anyone adjusting to reduced vision, regardless of its cause, as would their Guide to Low Vision Aids and Technology.  Another publication is a guide for family, friends and carers. The website also has sections on "Living Well with MD", and research into MD.

Macular Disease Society (UK)

The Macular Disease Society Information section has leaflets (downloadable in PDF format, and often in MP3) on a range of eye health and lifestyle topics. While much of the information is UK-specific, it can provide pointers for follow-up on what may be available in NZ. 

In the "About MD" section is a feature on Charles Bonnet Syndrome, with articles and a video where a Society member talks about her experience of visual hallucinations.  The Society also has videos on YouTube, including a 4 part series where people talk about living with macular disease.  (When listening, remember that in the UK people often use the word "optician" where we would say "optometrist".)

MD Support (USA)

MD Support offers information and links to an extensive range of resources and networks for people with macular degeneration and similar retinal conditions. Under “Information about MD” there’s a link to an illustrated Anatomy of the Eye, with emphasis on the retina, and links to a range of audio visual presentations.  The “Eye Diseases and Conditions” department has links to articles on specific retinal problems, including degenerative myopia.

Your Eye Guide (UK)

Your Eye Guide has general interest news items and articles on vision, eye conditions and care, with video animations.

Retinal photographs on this website are courtesy of the New Zealand Association of Optometrists. Other photographs in our page headers are courtesy of the National Eye Institute, National Institutes of Health.