What is a rare disease?
- The most widely accepted definition is that a rare disease is one that affects less than five in 10,000 people.
- It is prominently cited that there are more than 7,000 different rare diseases.
- While individual diseases may be rare, the total number of Australians living with a rare disease is not. Approximately eight per cent of Australians live with a rare disease. Extrapolated to an Australian population of over 25 million people, this equates to around two million Australians.
- Approximately 80 per cent of rare diseases are of genetic origin.
- While there is large variation among rare diseases, people living with a rare disease face common challenges including timely and accurate diagnosis, limited care and support options and lack of research.
National Strategic Action Plan for Rare Diseases
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.
Rare Disease Day
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
Are you looking to study in 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!
Where is treatment available and how does it work?
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/
How do I access general health care in Australia?
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.
What are the costs of treatment?
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).
Can I take out an insurance plan to cover the cost of treatment?
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.
Can I become a member of Thalassaemia and Sickle Cell Australia while I am here?
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.
What if I have more questions?
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!
- Chair’s address
- TASCA 2020 AGM
- Christmas Activities and Self Care
- Thalia App
- Patient Pathway Program
- Interview with Donna, Social Worker
- TASCA Store Launch
- Around Australia
- TASCA 4 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 has been hard at work in Melbourne’s treatment centres to make them extra festive for the holidays!
Thank you to the team at Royal Melbourne Hospital (5 West Day Medical Centre) and Monash Health (Medical Infusion Unit) for letting our elves bring a little Christmas cheer to your space!
Be sure to take a photo when you are in for treatment and take a candy cane from the TASCA Christmas Tree!
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 firstname.lastname@example.org, or sending in the ‘Decline to Participate’ slip attached to the information brochure.
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