Haemoglobinopathy Registry at Monash Health

Monash Health is pleased to be participating in the Haemoglobinopathy Registry (HbR), a national database set up to monitor the health of Australians living with thalassaemia, sickle cell disease and other disorders of haemoglobin, and the medical care they receive.  

 

The registry is an important first step in a major project, which aims to ensure that all Australians living with a haemoglobinopathy receive the best possible medical care, now and in the years to come.  The more people who participate in the registry, the better researchers will be able to assess the current situation and help plan for the future. 

 

The Haemoglobinopathy Registry is managed by Monash University and has been approved by the Monash Health Research Ethics Committee. We have enclosed a registry information brochure, which describes what your participation means and how your privacy is protected.  Participation is voluntary and will have no impact on the care you receive. 

 

This registry is an ‘opt‐out’ registry. This means that unless you inform us within 14 days of the date of this letter that you do not wish to participate, we will begin entering your details into the database.  But even if you miss this cut‐off, you can still withdraw from the registry at any time, by calling the HbR project officer on freecall 1800 811 326, emailing hbr@monash.edu, or sending in the ‘Decline to Participate’ slip attached to the information brochure.

Peter on 3XY Radio Hellas

Peter, TASCA’s Chair, will be a guest on John Paganis’ radio segment live at 5pm next Friday on 3XY Radio.

Peter will be speaking about his own experience living with thalassaemia.

Tune in to AM 1422 or stream it online.

TASCA Christmas Card Design Competition

Design a Christmas Card using the template below Submit your design for your chance to win prizes and maybe even have your card printed and used as the TASCA 2020 official Christmas Card!

 

You can submit your design in 3 ways:

 

1. Upload a clear image of your design below

2. Post your design to TASCA, P.O. Box 3076, Moorabbin East, VIC 3189

3. Give your design to the MIU staff or TASCA Committee

 

Submissions must be received by November 16, 2020. 

 

*Competition open to kids under the age of 18 residing in Australia only. TASCA retains the right to alter the terms and condition of the competition at any time.

 

Submit Your Design Here!

TASCA Guests on 3XY Radio Hellas

Dr John and Mary Tassigiannakis will be guests on John Paganis’ radio segment live at 5pm tomorrow on 3XY Radio Hellas.

They will be speaking about haemoglobin disorders and the shifting landscape of the conditions in Australia.

Tune in to AM 1422 or stream it online.

TASCA AGM 2020 Notice

Thalassaemia and Sickle Cell Australia

Dear Member     

You are invited to attend TASCA’s Annual General Meeting to be held on 11th November 2020, online via ZOOM. (See link details in the agenda) 

TASCA is formally calling for nominations to the Committee of Management for the period 2021-2022. The Committee consists of 9 positions, 8 of which are currently filled.   

The Committee of Management positions are as follows:  

Executive Committee 

  • Chair – Peter Verveniotis 
  • Deputy Chair – Robbin Vissakodeti 
  • Treasurer – Joanne Mucciaciaro 
  • Secretary – Pat Bollard 

General Committee 

  • Yannis Androulakis 
  • Ella Luong 
  • Karen Parr 
  • Dr John Malios 

Therefore, one General Member position will be open to nominations from current financial members. The term of the position will be two years as per the Rules of Association.      

The following documents are attached: 

Please read all documents carefully and note that if you wish to nominate either yourself or another person to Committee positions, current financial membership of TASCA is necessary. 

The Committee and I look forward to seeing you there. 

Please RSVP through Eventbrite using the link below

Kind regards 

Peter Verveniotis 

Chair 

TASCA Halloween Mask Competition

Halloween is coming up and we want to see your best halloween costume or mask! 

 

The scariest or prettiest creation (as judged by the TASCA team) will win some spooky prizes!*

 

Entries close on Halloween (31/10/2020) so start putting you costume or mask together!

 

If you need inspiration, why not decorate one of these mask templates:

*Competition open to kids under the age of 18 residing in Australia only. TASCA retains the right to alter the terms and condition of the competition at any time.

Submit your photo here!

TASCA Newsletter (Spring 2020)

The latest TASCA newsletter is out now. Have a read and get updated on all of TASCA’s activities and advocacy work! 

Contents:

  • Chair’s address
  • TASCA 2020 AGM
  • TASCA Update
  • Upcoming Events
  • Research Developments
  • Who’s Inspiring Us
  • TASCA Online
  • Around Australia
  • TASCA 4 Kids (Including fun activities and competition for kids!)

Want a physical copy? Let us know by sending a request through email.

You can also download a PDF here.

View previous newsletters here.

TASCA 4 Kids

Join us on Wednesday 1:30 to 2:00pm: https://us02web.zoom.us/j/89353395964

TASCA Newsletter (Winter 2020)

The latest TASCA newsletter is out now. Have a read and get updated on all of TASCA’s activities and advocacy work!

Contents:

  • Mental Health Support for Patients
  • Chair’s Report
  • Australia Lit Up Red
  • National Blood Donor Week
  • Medical Infusion Unit Opening
  • Gina’s Birthday Fundraiser
  • Smart Apps and Anemia
  • TASCA Staff Changes
  • Online Chat Room for Teens
  • Genetics Workshops
  • Social Media Challenges
  • Upcoming Events

Want a physical copy? Let us know by sending a request through email.

You can also download a PDF copy.

View previous newsletters here.