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Share your mastocytosis or mast cell activation syndrome experiences

TAMS Research Committee and Dr Jason Fok are proud to launch the first official TAMS research survey. We invite you to complete the anonymous survey after ensuring you comply with the below inclusion criteria.


  • 18+
  • Is diagnosed with Mastocytosis or MCAS
  • Resident in Australia


  • Is a parent or carer
  • Under 18
  • Not located in Australia
  • Does not have a diagnosis of Mastocytosis or MCAS

This survey aims to collect demographic information and patients’ experiences living with these conditions. Participation is completely voluntary. By completing the survey you imply that you consent to participate.

This survey contains both open-ended and scored questions. The latter may be answered using the given score value, for example, 1 to 5 as indicated. This survey is estimated to take 30 minutes to complete. The survey closes midnight, 31 October 2020.

This survey has been approved by the Eastern Health Human Research Ethics Committee, Box Hill, Australia (Approval Number: LR19/085)

Future surveys will be targeted at carers and youth.

Complete your survey online before 31 October.

Please let us know if you need a printed version mailed to you. Request before mid-October to allow for current mail delays throughout Australia.

Complete this survey once only.

Research results will be announced on Rare Disease Day 2021 (February 28).

We look forward to receiving your responses,

TAMS Committee

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