Website coming soon
Apologies for the delay. We intend to get this website up and running soon, but we could really use some more support from those affected by Maffucci Syndrome, or their families and Physicians.
If you are reading this page, please get in touch. This is a very rare condition and we need your input, no matter how large or small. This will be our space to share our experiences, stories, research and information. A common ground where we can identify with each other, and encourage our Physicians to read our input and compare notes.
The website is intended to be a resource of information and support for the average person to learn about Maffucci Syndrome, a very rare disease affecting men and women worldwide.
Whilst there is information available on the Internet discussing Maffucci Syndrome, this is mostly full of medical jargon, clearly not aimed at the 'average' person. This creates a frustrating barrier to information which in some cases can prove vital.
We plan to include the following on this website:
- Public forum where people may create posts and discuss topics relating to Maffucci Syndrome online
- Profile page where people can add and edit details about themselves, and write a brief history of their experience with Maffucci Syndrome
- Frequently Asked Questions (and answers)
- Links to other related worthwhile resources available on the Internet
- About Maffucci Syndrome / symptoms / history / etc
- Qualified Opinion & Advice - hopefully from qualified medical practitioners that are willing to help write for us in a plain English format
The website will rely heavily upon the input of Mafucci Syndrome sufferers or their families, and as you know there are not too many of us, so please get involved.
If you would like to be informed when we launch this website, or if you have any suggestions or can help in any way - please contact us with your details using the contact page.
This website is 100% free, and does not aim to create any profit whatsoever. It is managed by the family of a Maffucci Syndrome sufferer. As with all rare diseases, there is never going to be enough time spent in research. Hopefully, we can share our research, compare stories, and then enlighten our medical practitioners so that we receive the continuity of care that we deserve.