TASCA Newsletter (Autumn 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.

Do you have β-thalassaemia? We want to hear from you!

Monash University is currently conducting a study to better understand what men and women with beta thalassaemia know and think about fertility and pregnancy. We want to use this information to design educational materials to help people with thalassaemia better understand how thalassaemia affects fertility and how to achieve a safe and healthy pregnancy! 

All we need you to do is fill out an online survey. It will only take 20 minutes to complete and will ask you about your experiences and knowledge about contraception, fertility and pregnancy in thalassaemia. The survey responses are completely confidential and anonymous.

To access the survey, please click here. You can complete the survey anytime on your computer, phone or any other device!

The more people who complete the survey, the better we can make the educational materials, so if you know anyone who would be interested in participating please pass the link on!

Introducing: TASCA’s Podcast

In TASCA’s first podcast, Sam talks with TASCA’s Vice-Chair, Robbin, about life as a thalassaemia and sickle cell affected family during the current COVID-19 quarantine.

Join us as we explore topics that are relevant right now to patients and families living with genetic blood disorders in Australia.

Views and opinions expressed on this podcast are those of the host and guests and do not necessarily express TASCA’s official policy and position.

TASCA Newsletter (Autumn 2020)

TASCA Newsletter (Autumn 2020)The latest TASCA newsletter is out now. Have a read and get updated on all of TASCA’s activities and advocacy work!

Contents:

  • COVID-19
  • Action Plan for Rare Diseases
  • Social Work – Monash Health Medical Therapy Unit
  • Mary’s Farewell
  • Lifeblood Teams Event
  • Australian Haemoglobinopathy registry
  • Uplift Project
  • Cards for Peter
  • Greek Festival
  • TASCA Family Day
  • Kids Page

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

You can also download a PDF copy.

Expression of Concern for Social Worker Provision at MTU

18 March 2020

To the Monash Health Executive Team

Re: Expression of Concern for Social Worker Provision at MTU

Thalassaemia and Sickle Cell Australia would like to express our concern, on behalf of patients, regarding the provision of a dedicated social worker for patients attending the Medical Therapy Unit at Monash Health.

Mary Tassigiannakis, who has been serving the patients at the MTU for 27 years, has recently retired. While her experience and knowledge cannot be replaced immediately, it is of great importance that Monash Health will be able to provide a suitable replacement that can provide for MTU patients on a regular and consistent basis just as Mary did.

Managing a haemoglobinopathy is complex. Many patients encounter challenges that are unique to their situation. For many years, the experience and expertise of a dedicated social worker at MTU were able to help patients navigate these challenges. This must continue.

We, and the patients of the MTU, implore the management of Monash Health to pledge in continuing this vital service for haemoglobinopathy patients at the MTU and the future transfusion unit.

Enclosed are the signature and names of patients expressing the same concern.

Sincerely 

Peter Verveniotis

Chair

Robbin Vissakodeti

Vice Chair