Infographic from Thalassaemia International Federation on the characteristics, eligibility criteria, and potential risks of current and emerging cures.
Visit the TIF website for more resources like this.
Researchers at the University of New South Wales are recruiting participants to consider a research study titled “Couples’ decision-making when considering preimplantation genetic testing (PGT) because of a hereditary condition”. Preimplantation genetic diagnosis (PGD) is a reproductive technique used to test embryos to determine whether they are affected by a particular genetic condition. It is also known as “Preimplantation Genetic Testing for monogenic/single gene defects” or “PGT-M”.
This research study aims to investigate couples’ decision-making towards using PGT-M by using an online survey.
You and your partner are eligible to participate in this study if you and your partner are at risk of having a child affected by a genetic condition and are either considering using PGT-M or have already undergone PGT-M.
Participation in the study would involve completing an online questionnaire, which will take about 15 minutes. If you have a partner, and your partner is also interested in participating in our study, please forward this email to your partner. The Participant Information is included in the link below, which provides more details about this study and describes what participation will involve. The first 200 individuals who complete the questionnaire will be provided with a $30 Coles gift card to reimburse their time. Participation in this research is voluntary. Your decision regarding whether to take part will not affect your relationship with your doctor and UNSW.
Though both you and your partner are encouraged to take part in our study, only one individual’s participation is also welcome. If you are interested in participating in this study, please click on the link relating to the appropriate questionnaire version below.
Link 1: Questionnaire for women who have undergone PGT-M (PGD)
Link 2: Questionnaire for women who are considering PGT-M (PGD)
If your partner is interested in participating. We ask that your partner click on the link to the appropriate version below or copy and paste the URL into an internet browser:
Link 3: Questionnaire for partners of women who have undergone PGT-M (PGD)
Link 4: Questionnaire for partners of women who are considering PGT-M (PGD)
If you or your partner have any questions, please contact the Research Coordinator, Ms Lin Cheng at UNSW (email: [email protected] or call 1800 814 403 for free).
You can also contact the Coordinating Principal Investigator Professor Bettina Meiser via email address: [email protected] or call 9385 0025.
In February 2020, Australia’s Minister for Health launched the National Strategic Action Plan for Rare Diseases (the Action Plan), ahead of Rare Disease Day. Rare Voices Australia (RVA) led the collaborative development of the Action Plan, which involved extensive stakeholder consultation with all key stakeholders in the rare disease sector.
The Action Plan has three interrelated Pillars with Priorities, Actions and Implementation areas that work towards the best possible outcomes for Australians living with a rare disease.
The three Pillars are:
1. Awareness and Education
2. Care and Support
3. Research and Data
‘Developed by the rare disease sector, for the rare disease sector,’ the Action Plan can drive and future-proof much needed reform.
First launched in 2008 by EURORDIS – Rare Diseases Europe, Rare Disease Day 2021 (28 February) will mark the thirteenth time that rare diseases have been recognised globally. It will be the twelfth year the event will be commemorated in Australia.
The main objective of Rare Disease Day is to raise awareness among the general public and decisionmakers about rare diseases and their impact on people’s lives. In 2020, thousands of events were organised in over 100 countries and regions to mark the day. The rare disease community united across borders to show that Rare is many. Rare is strong. Rare is proud! In Australia, a number of events were held including the Action Plan launch at Parliament House in Canberra, the Rare Together Expo in Perth, Rare Star Day, the Rare Disease Day Fun Run and Walk in Cairns and more. A number of buildings around the country were also lit up to mark the day.
Source: Rare Voices Australia
Australia can be a great place to live and study. However, for international students, navigating a new health system and making sure you have access to treatment during your stay can be tricky.
Below are some of the questions we receive frequently from students just like you!
There are treatment centres for thalassaemia in all major cities in Australia. Transfusions and thalassaemia treatment is readily available in these hospitals and while other hospitals might not have the same level of thalassaemia expertise, they would still be able to provide transfusions.
To arrange treatment, contact the hospital directly.
For a list of all the main treatment centres visit our website: https://www.tasca.org.au/treatment-centres/
The Australian health care system has two major types of health care, Primary Health Care and Secondary Health Care.
Primary health is the first port usually the first contact in access health care. This is usually through a General Practitioner. Through primary health providers, you will be able to be referred to specialists and Secondary Health Care such as hospitals.
For more information on Australia’s Health System have a read of this Australian Institute of Health and Welfare Publication.
If you don’t do not have permanent resident status or specific visa statuses in Australia, you will have to pay the full fee for treatment and medication.
Costs per hospital visit can vary depending on the situation and hospital. A rough guide for a standard visit for a transfusion is around $1500AUD (excluding additional tests and scans required).
International students are required to obtain OSHC (Overseas student health cover), which can cover costs relating to treatment.
However, the treatment of a chronic, pre-existing condition such as thalassaemia will be subjected to a 12-month waiting period.
During that waiting period, access to healthcare listed under the Medical Benefits Scheme and unrelated to pre-existing conditions will be covered.
A list of insurers and more tips can be found here on the Aushealth Hospital website.
Contact your insurer before seeking treatment to confirm and exclusions and what out of pocket costs you should expect.
Yes! We welcome all students and new residents to join our family. You will have access to our events and programs as well as be informed of new updates. Becoming a member will also help us advocate on your behalf should you need it.
We are here to help! Send your questions through our contact form and we will be in touch!
TASCA will be holding a fundraising sausage sizzle on 30th January 2021 to raise fund for our important work to support the community and raise awareness for haemoglobin disorders.
We are looking for volunteers!
If you are interested, please let us know by filling out this form.
You can also support us by coming down to say hi and buy a snag from us!
We will be there from 10:00am to 4:00pm.
See you there!
The latest TASCA newsletter is out now. Have a read and get updated on all of TASCA’s activities and advocacy work!
Contents:
Want a physical copy? Let us know by sending a request through email.
You can also download a PDF here.
View previous newsletters here.
