The Thalassaemia International Federation is an unusual non-profit organisation, based in Cyprus, that is unconnected to any government sponsors. Its website is colourful and the homepage has gimmicky balloon links (that you have to click twice) to get to the rest of the site - but it is fun to run the cursor over them all and listen to them popping.
All the usual suspects are there, including 'About Thalassaemia' and 'FAQs', and it is streets ahead of the UK's offering, of which there is more later.
In particular, I liked the 'Medical Focus' section, with links to useful articles and data that are aimed at healthcare professionals.
I was also taken by the section on genetics, with colourful diagrams that explain the defect in the haemoglobin molecule, a gene map and family trees explaining how the condition is inherited.
Why go there: the information is bright and clear.
Downside: none.
Information from: Thalassaemia International Federation.
Address: www.thalassaemia.org.cy/
Beta Thalassaemia
This is the place to go if you want to make sure you know all you could possibly want to about this condition.
All the epidemiological and aetiological information you need is here, followed by clinical features, diagnosis and management. The treatment coverage is up to date and extensive, and surprisingly for eMedicine, there are a couple of good images of blood films at the end.
Why go there: all you need to know.
Downside: somewhat indigestible.
Information from: eMedicine.
Address: www.emedicine.com/med/topic2260.htm
Screening programme
To say I was unhappy with this site would be putting it mildly. It is difficult to navigate and seems to almost deliberately obfuscate attempts to find out key details. For example, is there a thalassaemia screening programme in my area; if not, why not; and when will it be effective?
You can hunt around for scraps of detail, some of which are not worth finding, such as the roll-out map that does not go beyond 2005. If you try hard you can find some 'high prevalence' trusts that have a screening programme in place, but it is all way beyond the deadline.
Once again the DoH is getting away with having made an announcement, with great fanfare, that thalassaemia screening would be implemented by 2004, and then keeping quiet about the fact that it is still a work in progress several years later.
It's just like the 'everyone will soon have a digital hearing aid' promise that's still woefully behind schedule.
Why go there: you may learn something if you have the patience
Downside: could do much, much better
Information from: NHS
Address: http://sct.screening.nhs.uk/
Anaemia
A basic finding in thalassaemia is a hypochromic microcytic anaemia; however, this is also found in a myriad of other conditions, many of them much more common.
This page does not mention thalassaemia specifically but it is worth going there because it covers all the angles when it comes to deciding what to do when considering the cause of an unexplained anaemia of this type. There is an excellent illustrative blood film to remind you of the key features.
Why go there: covers all possibilities
Downside: no thalassaemia details
Information from: surgical-tutor.org
Address: www.surgical-tutor.org.uk/core/preop1/iron_ deficiency.htm
Patient Information
I was disappointed with this site, starting with the first page, which carries an image of a child being given a blood transfusion, with the message 'Tied for life'.
It may attract sympathetic donors, but will do little to cheer up someone who has just had the diagnosis made.
There are too many broken links and 'under construction' signs to make finding facts simple, but the section of downloadable PDFs is worthwhile. This site has great potential - but needs a lot of work.
Why go there: reasonably useful for patients
Downside: too many errors
Information from: UK Thalassaemia Society
Address: www.ukts.org/
Dr Barnard is a former GP in Fareham, Hampshire.
