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Welcome to Mastopedia: a constantly updated repository of information about Mastocytosis and other Mast Cell Disorders. Feel free to browse, read the privacy policy, then register to share your knowledge with others.

EXCITING NEW MASTOCYTOSIS RESEARCH

If you have a diagnosis of Mastocytosis, you are eligible to participate in the MPN disorders research being carried out by 23andme (Mastocytosis is an MPN disorder).

To participate, click here:

https://www.23andme.com/mpn/codereq/ (external link)

There are only 1000 places in this research, and with a variety of MPNs being studied, we want to ensure as many of the 1000 places in this research go to Mastocytosis to facilitate specific breakthroughs in diagnosis, treatment and disease progression. Just look at what 23andme has done for Parkinson's Disease patients! (external link)

It is completely free to participate - you don't even have to pay for shipping for the participant kit - 23andme testing is worth $399 to the general public, and by participating you get all of the benefits of a 'normal' 23andme account (your deep ancestry and migration patterns, any relatives who have taken the test up to 5th cousins, your likelihood of getting certain diseases, disease hereditary, etc), or alternately, for those who prefer, you can choose to participate in the study and simply participate in the study, without seeing all of that additional information.

We strongly encourage all Mastocytosis patients to participate, and to sign up to the study with haste.

Sincerely,
Mastopedia.com Administrators


New: Searchable Archives

At http://archives.mastopedia.com (external link) you can find searchable archives of both the Mastomedical list and Masto-Med (the old Surfnet list).

Mastopedia Picks

We are starting up slowly, but there are already a number of interesting pages well worth a read:

The wiki on Mast Cells has some fantastic information about the types of secretions "leaked" by Mast Cells as well as how different treatments interact with these released Mediators. Do you have some information you can contribute to this page?

Faith has created a very interesting blog post outlining how she was diagnosed. We would love to hear your story! To create your own blog and start posting, register, and then click blogging for more info.

More Highlights

arrow We are doing live 'feeds' from the activity of other masto-related pages around the web. You will see these feeding on the right of the page, when you register and log in.

arrow We have a new YouTube channel called MastopediaTV with a number of Mastocytosis-related videos well worth watching. Feel free to send links to any appropriate YouTube videos to the website administrator for consideration.

question We are seeking information on the Mastocytosis page, in particular, a first pass on explanations for all of the umbrella diseases falling under Mastocytosis. Wherever possible, please include references and links at the bottom of the wiki, if you have used a source.

question Got interesting information but don't know where to put it or how to wiki? Please put it in the Drop Box, and others will take care of it!

question Looking for information but don't know where to find it, even after using the 'find' box (on the top right)? Please put it in the Question Box, and others will try to answer your question.

Welcome, happy browsing, and don't forget to join the email discussion lists, especially if you have a suggestion for the site. ~ Mastopedia Admin.


Contributors to this page: admin , ivo and michelle76 .
Page last modified on Sunday 20 of November, 2011 03:17:04 UTC by admin.

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