The organization of knowledge throughout the Internet follows the (in)famous “3M” principle: Massive, Messy, Multiple sources. To make some order of this chaos, I have created a list of 9 very useful links to deal with Charcot-Marie-Tooth disorder. Just 9 links, no more! There are many other websites out there, including some touching personal blogs written by CMT patients. It you know a website that should be added to the list, feel free to insert that in the comments. Many people will read this post and they can all benefit from your knowledge. Sharing is caring.
1. Wikipedia on Charcot-Marie-Tooth
The Charcot-Marie-Tooth page on Wikipedia is probably the first page that we have all checked. The official numbers are massive: over 125,000 patients in the US and 23,000 in the UK. We are proud to be part of Wikipedia ourselves, as authors, writers, and donors. If you really care and grateful like me, consider offering or making a donation to Wikipedia. The foundation which runs the famous online library is called Wikimedia, and billions of people use the website every month, just like you.
2. CMT Doctors and Specialists Directory
An impressive directory to find doctors and other professionals specialized in Charcot-Marie-Tooth. This massive job is provided free of charge by CMTA, the USA Association. Unfortunately it includes only specialists from the United States (for now).
3. Charcot-Marie-Tooth Resource Center
The National CMT Resource Center is a website full of information and a busy Foundation. They also have a very active Twitter profile on CMT. The foundation is New York based but much of the information is international.
4. NHS page on Charcot-Marie-Tooth
The National Health Service of the United Kingdom dedicates a section of its website to CMT, with videos, clinical trials and some community tools. Outside the US, the UK is one of the most active countries in spreading the knowledge of CMT, thanks to the doctors and the excellent national association CMT UK.
5. Youtube Channels on CMT
The CMT Association (USA) has its own collection of free videos on Charcot-Marie-Tooth dating back 2009, including interviews of doctors and patients. Another excellent Youtube Channel on CMT is provided by the NH Foundation. And don’t forget our own CMT Journal TV. It’s small (for now) but growing. Subscribe to these Youtube Channels – it’s the best way to stimulate the production of new videos.
6. U.S. National Library of Medicine
MedlinePlus – a service of the U.S. National Library of Medicine – has its own area dedicated to CMT. This page offers a fantastic collection of links and articles from many different sources, including some material in Spanish. I have a personal commendation for Dr. Donald Lindberg, director of the National Library of Medicine. MedlinePlus is a goldmine of health information with zero advertising, a rare choice for the Internet. Thank you Dr. Lindberg!
7. Mayo Clinic on CMT
The famous Mayo Clinic of Minnesota has been amongst the top of the list of “Best Hospitals” for more than 20 years. Its research group deals with Charcot-Marie-Tooth from the very beginning, and they keep an excellent updated website on CMT with every kind of data, from a generic definition to a list of lifestyle and home remedies.
8. 21st Century Charcot-Marie-Tooth Disorder (CMT) Sourcebook
There is only one complete Kindle book on Charcot-Marie-Tooth at Amazon. This is sad!. Doctors are more active than in the past, and the knowledge of CMT is finally growing. But writing is still focused towards medical journals. We wish to have more authors writing for the general public. Niche publications for specialists are important for medical research, but books for the public are essential to increase the awareness and thus fund the research itself. Doctors should never forget that!
9. CMT Journal Links page
Last but not least – we hope – our own collection of Charcot-Marie-Tooth links. The page is updated regularly and we add any links we can find on CMT. Enjoy!
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