TASCA Newsletter - Issue 4 April 2024

Connect with TASCA: Latest News and Updates

Phone: (03)

Email: Info@tasca org au Address: Room 44, Barry Neve Wing Moorleigh Community Village Bentleigh East, Vic 3165 Australia

TASCA acknowledges Australia's first people as the traditional and custodians of the land on which we meet and provide our services to those effected by genetic haemoglobin conditions. We pay our respect to them and their cultures, and to elders both past and present.

Stay

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PatBollard Chairperson, ThalassaemiaandSickle CellAustralia

Welcome to our April Newsletter. As we head into colder weather, I hope everyone is taking care of their health and wellbeing. April has continued to be a busy month for us at TASCA. Please read the updates below and feel free to reach out to us for further information or any concerns you may have.

UNIVERSITY OF SYDNEY RESEARCH STUDY

TASCA has been invited to support a research project relating to high-cost gene therapies for conditions including Haemophilia, Beta-Thalassemia and Sickle Cell Disease. It is part of a larger program of work that will help guide existing guidelines to ensure decision making integrates consumer/societal preferences, and ethicolegal, socio-political and cost-effectiveness and financial considerations and uncertainty into decisions about funding high upfrontcost gene therapies.

The study is being led by Professor Kirsten Howard, Health Economist from the University of Sydney, and our organisation has agreed to support Professor Howard’s research project through study recruitment, outreach and advocacy. We will circulate ethically- approved recruitment materials (eg. flyers, social media) provided to us, to our membership and relevant stakeholders.

Involvement in this study is extremely important to the thalassaemia and sickle

From

the Chair

cell community, as it provides an opportunity for patients and their families to have input into future directions of gene therapies in Australia. Participation is entirely optional, however it is exciting for us to be at the forefront of this type of study and feel empowered by having a say in the availability and accessibility of gene therapies.

Phone (03) 7015 5637

Email:

Address:

Please keep an eye out for further information and ways in which you and your family can opt into this study.

HAEMOGLOBINOPATHY REGISTRY (HBR)

This initiative through Monash University aims to establish a more accurate and current demographic picture of people living with haemoglobinopathies in Australia. A national picture is useful (and necessary) when we explore treatment options, best practice & care, knowledge and understanding.

Please see attached information document from Monash University and again feel free to contact

either Pat Bollard or the office for further information.

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MUSKAAN CARE TRUST & PUBLIC HEALTH ALLIANCE NEW ZEALAND

MONASH INFUSION UNIT

As part of our growing collaboration with Muskaan Care Trust, the New Zealand thalassaemia organisation, I was invited to speak at their national public health conference last week. It was very humbling to discuss our work and to highlight the work we are doing in the areas of advocacy, awareness and education.

In the spirit of ongoing collaboration, representatives from New Zealand will be visiting us in May and we are looking forward to discussing ways in which we can continue to work and grow together.

We have continued to receive input from patients and families who receive treatment at MIU and are working towards establishing regular meetings with the team to discuss issues and concerns. If you have any questions or concerns please conta 331

SECONDARY IRON OVERLOAD TREATMENT PATIENT EX

DrToddMarkhamfromtheUniversityofSydneyhasreached outtoustoimprovetreatmentsforsecondaryironoverload.

"IamaresearcherworkingwithProfRachelCoddatthe UniversityofSydneyexploringwaystoimprovetreatmentsfor secondaryironoverload.Wehavedesignedanewironchelator andareinterestedinreachingouttoyouandthepatient communitytogainanunderstandingofthepatientexperience withthesetreatments Thiswouldhelpustounderstandany issuespatientsexperienceandaidusinourongoingdesign process."

Ifyouwouldlikemoreinformationpleasecontacthimviaemail todd.markham@sydney.edu.au.Youcanalsolearnmoreabout himon https://wwwsydneyeduau/ /academic /todd-markhamhtml

WEBSITE

Last week, after many months of planning, designing and discussing, our new website went live! With a fresh, sharp look & increased functionality we are very proud of it. Please take the time to check it out & provide your feedback.

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UNI STALLS

In April we visited Swinburne University and RMIT Bundoora. We met a number of different students who were interested in learning about Thalassaemia and Sickle Cell, as well as participating in our quiz for a chance to win a free cupcake!

INTERNATIONAL THALASSAEMIA DAY

Don’t forget to mark your calendar for the 8th of May! This year we will be making a statement by illuminating landmarks in red in your city to observe International Thalassaemia Day.

You can read the Official Global Press Release from Thalassaemia International Foundation (TIF) here.

BLOOD DRIVE MAY - JULY

The competition of the states and territories for the Thalassaemia and Sickle Cell Blood Drive has started! Together we can make a real impact and save even more lives. Every drop counts. Can we count you in?

Join our Lifeblood Team by contacting Sally at healthpromotionsofficer@tasca org au or by visiting

https://app.donateblood.com.au/Qs2v