Cardiomyopathy Association of Australia

Aims:

• To provide the opportunity for members and their families to share their experiences and support one another
• To provide accurate and up-to-date information about cardiomyopathy to members, carers and their families
• To increase public awareness of cardiomyopathy
• To foster medical research in this area and liaise with health professionals.

Cancer Council of Australia

Cancer Council Australia works with its members the eight state and territory cancer organisations to:
undertake and fund cancer research
prevent and control cancer
provide information and support for people affected by cancer.
Cancer Council Australia was formerly called the Australian Cancer Society.

Although amyloidosis is NOT a cancer a number of patients with AL amyloidosis will also have myeloma, which is a type of cancer.

Carers Australia

The national peak body representing Australia’s unpaid carers.

Carers Australia Facebook page

The Centre for Community Driven Research (CCDR)

The Centre for Community Driven Research (CCDR) is a non-profit organisation facilitating meaningful connections between service providers, Research organisations, the non-profit sector, practitioners, industry, government and the communities for which they provide a service and aim to benefit.

Patient Experience, Expectation, and Knowledge (PEEK) is a CCDR research program which aims to give a clear picture of what it like to be a patient at a given point in time. By asking patients about their expectations, PEEK studies give a way forward to support patients with treatment, information and care. At this time PEEK studies are conducting a community project in Transthyretin Amyloid Cardiomyopathy information for the Community. Learn more about the CCDR and/or enquire about their ATTR-CA PEEK project here or by ringing Ms Ishka Bless on 0422 971 493.

Domestic and family violence

Sexual assault and violence.

1800RESPECT | Homepage Telephone and online

Faceboook – Amyloidosis Australia Support Group

Amyloidosis is a rare condition, and this group is for those with Amyloidosis and their loved ones. Let’s support each other, share information and raise awareness for Amyloidosis so that more research can be done & improve diagnosis, treatment, and quality of life for people with amyloidosis.

Whilst we are independent from the AAN, we encourage membership & support of the Australian Amyloidosis Network (AAN).

Genetic testing

Information on why to have genetic testing and how it is done.

Genetic testing and counselling services

Genetics clinics.

Heart Foundation

Information about the normal heart and tips about living with heart problems.

Cardiac Amyloidosis is not mentioned on this site.

Kidney Health Australia

Information about the kidney and diseases that can affect them.

Kidney forum. A secure discussion group about your kidney issues.

Free telephone Help Line. 1800 454 363

Leukaemia Foundation Australia

This Australian charity is a major player in offering a variety of services to patients with all types of amyloidosis.

• Accommodation for patients requiring treatment away from their home.
• A range of support services including psychosocial and practical help.
• Specific amyloidosis support and education meetings.

To receive more information and register for Leukaemia Foundation amyloidosis services call 1800 620 420 from anywhere in Australia.

Life Line

Crisis support 13 11 14

Medicare

Medicare cards

My Aged Care

The My Aged Care web site allows you to find out what services you may be eligible for if you are caring for someone with a chronic or incurable illness or if you have the illness yourself.

Phone 1800 200 422 to talk about services that may help you.

Read Ros Philips experience with My Aged Care in the section on Your Stories.

Myeloma Australia

Information about myeloma.

Support meetings and a support line 1800 693 566.

Management of Systemic AL Amyloidosis – Myeloma Australia

Also Guidelines for treating AL amyloidosis. 

Palliative Care Australia

Useful information about a number of issues for those who have or are caring for someone with a deteriorating incurable illness.

Princess Alexandra Hospital Amyloidosis Centre, Brisbane

Information about:

• treatment clinics and referral procedures
• All types of amyloidosis
• Education and support events

at Metro South Health

Fortnightly Friday afternoon clinic staffed by a team of health professionals including cardiologists, haematologists, neurologists, renal physicians, pathologists, specialised nurses, social workers

Contact/referrals
Email: Amyloidosis@health.qld.gov.au

Ph 07 3176 5772

Rare Voices Australia

Australians living with rare disease deserve equal access to safe, effective treatments and healthcare management in a coordinated and adequately resourced approach, no matter where they live. Australia’s health system is not giving people with rare disease a ‘fair go’. Focus of Rare Diseases Australia.

And on this site in “Your Stories” section.

Renal Society of Australia

The Renal Society of Australasia (RSA) aims to advance the care of people with kidney disease and to be the peak body for renal nursing and related allied health professionals.

St Vincent’s Hospital Amyloidosis Clinic Cardiomyopathy

Westmead Clinic — Adam Gardiner Fund INC

The Adam Gardiner Fund’s mission is to raise funds & awareness for Amyloidosis while working within the structure of Westmead Hospitals Immunology Department and its Institute for Immunology & Allergy Research (IIAR).