Relevant Organisations
Web sites offering information about Amyloidosis,
support, and practical help.
Australia
Australian Centre for Grief and Bereavement
Mission: To build the capacity of individuals, organizations and communities to enhance well-being following adverse life events.
Australian Government Department for Human Services
Information on payments for Carers and those living with illness
Australian Government Department for Human Services
Information on Medicare and Centrelink payments, Concession and Health Care cards.
Australian Government Department for Human Services
Supporting Carers
Depression and anxiety can hit anyone during their life time.
Sometimes you may feel you cannot talk to anyone about how you feel.
You can Ring 1300 22 4536 to talk to someone who will help you.
Online forums allow you to talk with others experiencing similar feelings.
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 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.
Medicare cards
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.
Sexual assault and violence.
1800RESPECT | Homepage Telephone and online
Information on why to have genetic testing and how it is done.
Genetic testing and counselling services
Genetics clinics.
Information about the normal heart and tips about living with heart problems.
Cardiac Amyloidosis is not mentioned on this site.
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.
- A booklet ‘Understanding amyloidosis‘
- Australia Amyloidosis Facebook site
To receive more information and register for Leukaemia Foundation amyloidosis services call 1800 620 420 from anywhere in Australia.
Crisis support 13 11 14
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.
Information about myeloma.
Support meetings and a support line 1800 693 566.
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
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
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.
Read. Vince O’Donnell’s journey with hereditary ATTR.
And on this site in “Your Stories” section.
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.
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).
Information to raise Awareness and offer Support to patients and carers with ATTR.
FOCUS
To make significant contributions to the quality and cure of Amyloidosis patients by exchange of experience and constructive interaction with other players at an international level.
Vince O’Donnell who has hereditary ATTR (ATTRv) is the Australian ATTR representative on the AA see “Patient’s experiences”
Vince’s goals for AA in Australia are:
- To participate in the various activities of the Amyloidosis Alliance-The Voice of Patients.
- The development of an Australian network that can facilitate the exchange of experiences between ATTR patients and their families.
- The development of a strategy to encourage more specialists to consider Amyloid Transthyretin as a possible diagnosis.
- Work towards improving access to resources, supports and appropriate medical attention for people diagnosed with ATTR?
- Contact Vince for more information: vnt1955@icloud.com
National Amyloidosis Centre London
This site contains information on:
- All types of amyloidosis.
- Separate patient and family information sheets on different types of amyloidosis
- Information for doctors and health professionals.
- Research and treatment trials at the NAC and around the world.
- Quarterly “on line” newsletters.
- Patient forum.
- Information on AL amyloidosis only.
- Essential Guide to AL amyloidosis
https://www.myeloma.org.uk/wp…/Myeloma-UK-AL-amyloidosis-Essential-Guide.pd.
- Information about all types of amyloidosis
- and treatments.
- Webinaires
- Support help line.
- Support groups.
- On-Line Newsletters.
Amyloidosis Research Consortium (ARC)
Goal of ARC
- To help improve understanding of the systemic amyloid diseases by bringing together experts in the field to work as a team on cutting edge research and develop a pipeline of key clinical trials and promising therapies.
- Information about amyloidosis.
- Research projects/questionnaires.
- Support groups around the USA
- Information about amyloidosis.
Brigham and Women’s Cardiac Amyloidosis Services
- Information about cardiac amyloidosis
- Professor Rodney Falk – video “Understanding Amyloidosis”
- Information about all types of amyloidosis
- Treatment and trials
- Patient stories
Mayo Clinic Amyloidosis Services
Information on all types of amyloidosis
MISSION
To promote research, education, clinical studies (including diagnosis and treatment), conferences and symposia on all aspects of amyloidosis worldwide.
- Information about ISA
- Meetings
- Journal “Amyloidosis”
- Membership