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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. More information for new users.

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/

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!

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 MASTOCYTOSIS SUPPORT GROUP LAUNCHED

The Australasian Mastocytosis Society (TAMS) has been created as an advocacy, education and support body for those throughout Australasia who suffer from or care for those with Mastocytosis or Mast Cell Activation Disorder (MCAD). TAMS has been established due to the overwhelming need for sufferers and their supporters to find a local voice and active support network.

TAMS is an independent ‘not for profit’ incorporated organisation with a committed and functional committee of individuals from Brisbane, Sydney, Wellington NZ, Melbourne, Port Macquarie and Seattle USA – all of whom are sufferers or carers, ensuring your needs will be met.

‘Connecting on the Coast’ is the first official mastocytosis conference to be held in Australia. There will be many speakers and workshops dealing with mastocytosis and MCAD as well as opportunity to meet others in a relaxed and friendly environment. At this conference, support group networks will be established and firm pathways established. For more information on the conference, to browse the program and to register, visit: www.mastocytosis.com.au
BECOME AN INAUGURAL MEMBER OF THE AUSTRALASIAN MASTOCYTOSIS SOCIETY (TAMS)

Receive constant updates via the TAMS website, discounts for future events (2013 conference etc), quarterly TAMS eNewsletter, yearly Research in Review eReport, member of online and face-to-face support groups and more. For further information email or visit www.mastocytosis.com.au

Searchable Archives

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

Mastopedia Picks

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

We have a recently updated 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.

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.

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!

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.

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