Some recommendations for websites & templates

OIFE is a European Federation with 18 European and 6 international member organisations. We were founded in 1993 and our first President set up a website many years ago ( and is managing it as volunteer webmaster.

Now our Board has decided that we should try to improve and modernize our website – if necessary with professional help.

We found a young web designer who created a first prototype for a possible new website – the minimum costs for the basic website would be around 3000 € – afterwards we would have to do a lot of work to fill the content management system ourselves to save more expenses…..

Should we go (and pay!) for the professional solution or stay with the old webmaster and website and try for some improvements?

How do other European organisations deal with their websites?
– do you have a professional who built and manages the website or “do-it-yourselves”?
– how much money in relation to your yearly budget do you spend for the website management?
– would you please tell us how much your basic website cost?


Dear everyone,

Actually I think that the most important tool European associations have is the internet. In my opinion, paying for a professional is the easiest way to obtain a good presence in the web. As long as the money is available and all parties agree, this seems to be a good solution – even if there’s still a lot you have to do on your own, like fill in contents.

Geske, Germany,

Dear All,

Since we started with hardly any funding we have made a simple Joomla website. Some of our volunteers are learning to work with it in practice.
Of course if we would have more funding we would be able to do better, but I am very satisfied with what we have.
The costs were approx. 600 euros.
The system is so easy that many volunteers can help and that is also very good for our team-building.
I would love to know more, however from a cost/revenue point of view I am very satisfied.

Marieke, NephcEUrope,


Like all of you, I have had to deal with problems of the website.

It is now considered “normal” to change a website every five years or so.

I would go with a professional, it is worth the money,  BUT make sure the “source” belongs to you. If, one day, you decide to work with somebody else, you need to ‘own’ the site and the design. I have recently experienced this with our blog-forum which simply “disappeared” with its designer  ….



IPOPI would echo all that is said – we are working on renewal of our site right now and we went to a competitive tender – amazing the deals that are available right now! So, yes to a professional … !! The new IPOPI site – which will be ‘pretty amazing’ will cost around €6,000 max.  We regard the website as important and worth that investment ……
Hi all
European Gaucher Alliance have chosen a professional web-designer. As our secretary also works for the UK association, she will take care of the updating we have chosen to use the same web-designer. We have just employed a UK company to design our site, and the cost is approximately £6,000.
Regards, Anne-Grethe, Gaucher Foreningen i Danmark,,

Hi everyone,

We’ve replaced our old website with Joomla.

Joomla is extremely open and allows you to produce content very easily and quickly without necessarily knowing HTML.

You might request help of a web designer for the initial design.

Anyhow you can find many templates on the net you can use as a basis for your website and adapt with your logos and colors.

You can share the production of content with members of your association with publication control.

Joomla comes with multilingual features and many many others.

We put in place an online fundraising tool using a Paypal plug-in for security reasons.

Our website is mainly in French but I have translated 25% of the pages which might be relevant in English for foreign visitors.

Best regards, Phil

Dear all,
For our website ( I use a content management system (CMS) called webEdition, which is now available for free.
For the Swiss-Ichthysis website I used Joomla at the beginning, but I switched to webEdition when it became free, because webEdition is easier to use.
The advantage of Joomla are the vast amounts of templates and designs.
Kind regards, Annette

Dear friends,
Our experience in terms of website is limited but we have plans for a new design. Our current website was  developed some four years ago by a medical doctor, a researcher on Haemochromatosis. Little has been done since then. We would like to use a professional for the new design but we are “poor” and for the time being, we have other priorities. This is why we are very interested by the experiences some of you have with the Joomla software.
Best regards, Françoise Courtois, EFAPH,
Hello Everybody,
FESCA (Federation of European Scleroderma Associations) works with a professional!
**Another interesting idea came from Marieke of about getting one designer to design various groups’ websites which then may lower the costs for each group! One response was that language may be a concern, but this may be an interesting option.
**Some more ideas: HSP, one of the new Federations we are helping through RareTogether, with no budget but a little time and web-savvy by their President, Fernando, set up a nice home page at It’s free and fairly simple. The home page to browse is

The other is a negative one from me, here at RareTogether we are using WordPress and it is a pain in the neck if you don’t have a lot of time and learn it well and if you have limited expertise.

Finally, I should mention that Eurordis has a tool called RareDisease Communities or RareDisease Connect at that not only allows you to set up a fairly complete website for your European Federation, it offers almost real-time translation into at least 4 languages as needed! Visit it and if you like it, there is a “contact” button that you can fill in and find out more about it!
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