Welcome to The Australasian Mastocytosis Society’s Website
Here we bring you information for sufferers, and carers, of Mastocytosis and Mast Cell Activation.
1st September 2015
Do you have Systemic or Cutaneous Mastocytosis and have Significant Symptoms?
A new trial has started at The Royal Melbourne Hospital using Omalizumab, a medication used by people with asthma
The study asks:
Can the mast cells in people with mastocytosis also be controlled by Omalizumab?
This project has been approved by the Melbourne Health Human Research Ethics Committee (Study Number: 2013.026) Participation in this study is voluntary. Any information we gain in the course of the study will be protected as confidential and anonymous.
FURTHER INFORMATION CAN BE OBTAINED FROM THE DEPARTMENT BY CONTACTING
CLINICAL TRIAL NURSE – STEWART DUNCUM ON 03 9342 3901
Both Mastocytosis and Mast Cell Activation are, unfortunately, still largely unknown to most GP’s and many specialists. Our website offers information for yourself as well as a source of information for your doctors.
The Australasian Mastocytosis Society (TAMS) was created in 2011 as an advocacy, education and support body for those throughout Australasia who suffer from or care for those with a Mast Cell Activation Disorder (MCAD) including Systemic Mastocytosis, Cutaneous Mastocytosis, Mast Cell Activation Syndrome (MCAS). 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 Sydney (New South Wales), Melbourne (Victoria), Perth (WA), Brisbane (Queensland) and Seattle USA – all of whom are sufferers or carers, ensuring your needs will be met.
In April 2012, TAMS hosted the first official mastocytosis conference to be held in Australia. It featured many speakers and workshops dealing with MCAD as well as providing delegates the opportunity to meet others in a relaxed and friendly environment. At this conference, support group networks and firm pathways established.
Before the first conference was even finished, planning for the 2013 Conference was underway. This was another extremely successful conference held on Friday 12th to Sunday 14th April, once again (due to popular demand) in the beautiful Port Macquarie, NSW, Australia.
Our 3rd conference, held in Melbourne in May 2014 was even better, incorporating our inaugural Walkathon “March for Masto”, which, in spite of Melbourne’s special weather of four seasons in one day, was also very successful as both a fun social event and as a fundraiser.
Our 4th annual conference is now done and dusted and what a conference it was! This was undoubtedly the best conference TAMS as held to date. The beautiful (although rainy) Sydney was our host city for the weekend of 1st – 3rd May. Photos and links to topics discussed by our amazing speakers from Australia and the USA will all be available shortly. So, watch this space.
Our 2nd annual walkathon this year was held in Melbourne and Sydney on 28th February, in conjunction with World Rare Disease Day. Two very successful and fun-filled events raised sufficient funds to ensure that our conference was the best possible. And it was!
Next year’s walkathon “March for Masto” will be held in many cities throughout Australia and once again will be on World Rare Disease Day, Sunday 28th February. Details will be available to you very soon so you will be able to find the one closest to you. Please lock this date into your calender and start getting your team together.
TAMS relies on your support and without that, we would not exist. If you are not a member already, please join us. The small amount of $25 per year (1st July – 30th June) will make a difference to us and will also give you exclusive access to our Members Only page and discounts on Conference Fees and t-shirts etc. You don’t have to become a member to make a donation, so feel free to support us if you wish.
Become a Member of The Australasian Mastocytosis Society (TAMS) (or make a donation).
As a member you will receive regular updates via the TAMS website , quarterly TAMS eNewsletter, yearly Research in Review eReport, member of online and face-to-face support groups and more.
For further information email email@example.com
To become a member complete the TAMS Online Membership Form
Please be aware that the information on this site is mainly intended for those newly diagnosed, and for those who want a basic knowledge of the condition. We have provided links within the site to more authoritative sites and articles, if needed.