Hi - can anyone give me any help in promoting my website about Marfan Syndrome

vickym

Hello
I just wondered if anyone can give me any help and advice about promoting my website. I have it registered with google and other search engines but the part of it that I am most interested in promoting is the Marfan Syndrome section and forum.

Marfan Syndrome is an hereditary condition that mainly affects the aorta in the hearts - it affects anyone of any age and can be sometimes lethal if not looked after properly by heart specialisted. Due to this I am eager to promote more understanding of Marfan Syndrome as I too am a sufferer and so is by younger brother. Saddley my mother died of the condition when she was 36 - so as you can appreciate its very dear to my heart.

You dont have to have Marfans - to join the forum - you could be a medical student looking for more knowledge of how it affects sufferers from a personal point of view - so as you can imagine I am looking for a fairly wide audience.

In the future I will be looking to advertise medical questionaires, researches etc so that my members can take part - so any advise on this too - would be most appreciated.

Well enough for now
Thanks for taking the time to read this message
Any help would be most appreciated.

Dora_the_Explorer_5

Hello Vicky, try posting your message on the Techie Board,there are loads of netheads there who will be able to advise you. Best wishes

bridiej

Moved this in here as you'll get more replies. Might be worth doing a search also as I'm sure this question has come up before.

jobbingmusician

Hmmm, I'm not totally sure that moving this post was the right thing to do as I would never have found it in the techie section. On the other hand, some of the things I'm going to say need techie input so I'm genuinely not sure!

If you want people with Marfan Syndrome to be able to access your website, you obviously need to get hold of them. If it affects the aorta, it would be useful to have links from other heart charities, so I would email the British Heart Foundation etc and ask them if they are interested in a mutual exchange of links. They can put you (and your logo, if you have one) on their links page and you can do the same for them. They may also be willing to run an article about your website/organisation in their newsletter if they have one. (If the BHF already have a links page you can use this to contact other heart charities).

If you can get the message across to people that there is a forum for MSyn sufferers you will probably get a lot of hits!!! But (Techie bit coming up) make sure your Google etc. registration has lots of words that people might search on, not just MSyn. (For example connective tissue, Antoine Marfan, heritable - 3 I have picked out after a 2 minute Google crash course on MSyn!) Someone on here will probably know how to do this, if you don't know already (I don't even know how to register with Google and I run a health charity website which gets about 500,000 hits a month :rotfl: )

Another possibility for promotion might be to use a celeb - the only person I have heard of as having Marfan (just by coincidence - is Sir John Taverner.

Good luck with the venture!

PS If you start getting a lot of hits, just post on the website about research, and encourage researchers to post a message on the forum - the researchers will come to you!!!!

ShallowStu

I would start by promoting it on forums of all kinds. It may sound odd, however if one reader of your post knows someone affected by this, they'll tell that person. Posting it here is a good start

Then, how about contacting the NHS? See if they can suggest some sites where a link to your site could be added. They may also give the url to specialists in this field, so they can pass it on to their patients

jobbingmusician

Yes, I was giving this more thought (about how we promote our website) and sites like the bbc health website are very good places to have links. I assume your website and messageboard are mostly about those affected by MSyn talking to each other/professionals/researchers - this is very popular atm, so most websites will be happy to give you a link, I would have thought! Have you tried drug companies, as well?

Basically, all the people who come up when you Google Msyn are all people who should be interested in using you and referring to you