Navigating the internet for information regarding diseases and treatments can be daunting, with a lot of poor quality or misleading information being available. Especially when you have a new diagnosis, full and frank discussion with your doctor is the best first step to informing yourself about your condition. We have numerous useful patient information sheets which have been put together using published evidence and best practice, which you may find helpful.
When you are ready to learn more, the internet can provide good quality information providing you keep to reputable websites that provide evidence-based information and advice. Some which we recommend are:
Amyloidosis
- Amyloidosis Australia www.amyloidosis.com.au
- Amyloidosis Support Network (USA) www.amyloidosis.org
- Leukaemia Foundation www.leukaemia.org.au
Blood Clots and thrombosis
- Clot Connect (US) www.clotconnect.org
Cabrini Hospital
- Cabrini Health Website cabrini.com.au
Caring for Patients
- Carers Australia www.carersaustralia.com.au
- Young Carers (Aus) www.youngcarers.net.au
- Living Caring Working (Aus) www.livingcaringworking.com
- Working Carers Support Gateway www.workingcarers.org.au
Cancer – including blood cancers and Clinical Trials
- Australian Cancer Trials Online www.australiancancertrials.gov.au
- American Cancer Society (USA) www.cancer.org
- Cancer Australia www.canceraustralia.gov.au
- Cancer Council (Aus) www.cancer.org.au
- Cancer Voices (NSW) www.cancervoices.org.au
- Look Good Feel Better (Aus) www.lgfb.org.au
- Macmillan Cancer Support (UK) www.macmillan.org.uk
- National Cancer Institute (USA) www.cancer.gov
- Virtual Medical Centre (Aus) http://www.myvmc.com/
Complementary Therapies
- National Centre for Complementary and Alternative Medicine (USA) www.nccam.nih.gov
Government and Other Support Agencies
- Centrelink (Aus) www.humanservices.gov.au
- Medicare (Aus) www.humanservices.gov.au
Grief, Loss and Bereavement
- Australian Centre for Grief and Bereavement www.grief.org.au
- AARP Grief and Loss (US) www.aarp.org
- Bereavement Care Centre www.bereavementcentre.com.au
- Good Grief www.goodgrief.org.au
Haemochromatosis
- Haemochromatosis Australia www.haemochromatosis.org.au
Immune Thrombocytopenic Purpura (ITP)
- Platelet Disorder Support Association (ITP and ITT) www.pdsa.org
Leukaemia
- CLL Topics (US) www.clltopics.org
- CLL Forum (US) www.cllforum.com
- CML Support (UK) www.cmlsupport.org.uk
- International CML Foundation www.cml-foundation.org
- Leukaemia Foundation www.leukaemia.org.au
- Leukaemia & Lymphoma Research (UK) www.leukaemialymphomaresearch.org.uk
- Leukemia and Lymphoma Society (USA) www.lls.org
Lymphoma
- International Waldenstrom’s Macroglobulinemia Foundation (USA) www.iwmf.com
- Leukaemia Foundation www.leukaemia.org.au
- Leukaemia & Lymphoma Research (UK) www.leukaemialymphomaresearch.org.uk
- Leukemia and Lymphoma Society (USA) www.lls.org
- Lymphoma Association (UK) www.lymphomas.org.uk
- Lymphoma Australia www.lymphoma.org.au
- Lymphoma Coalition www.lymphomacoalition.org
- Lymphoma Research Foundation (USA) www.lymphoma.org
- The Cutaneous Lymphoma Foundation http://www.clfoundation.org
- The Waldenstrom's Macroglobulinemia Community in Australia http://www.wmozzies.com/
MDS
- Aplastic Anaemia and MDS International Foundation www.aamds.org
- Leukaemia Foundation www.leukaemia.org.au
- MDS Beacon www.mdsbeacon.com
- MDS Foundation (USA) www.mds-foundation.org
- MDS UK Patient Support Group www.mdspatientsupport.org.uk
MPN
- Leukaemia Foundation www.leukaemia.org.au
- MPD-Voice (UK) www.mpdvoice.org.uk
- MPN Education Foundation (USA) www.mpninfo.org
- MPN Research Foundation (USA) www.mpnresearchfoundation.org
- The Australasian Mastocytosis Society (TAMS) www.mastocytosisaustralasia.com
Myeloma
- International Myeloma Foundation (USA) www.myeloma.org
- Leukaemia Foundation www.leukaemia.org.au
- Multiple Myeloma Research Foundation www.themmf.org
- Myeloma UK www.myeloma.org.uk
- Myeloma Foundation of Australia www.myeloma.org.au
- Myeloma Euronet www.myeloma-euronet.org
Peter MacCallum Cancer Centre
- Peter Mac Website www.petermac.org
Relationships, Fertility and Sexuality
- Fertile Hope (USA) www.fertilehope.org
- Relationships Australia www.relationships.org.au
Specific Age Groups
- CanTeen www.canteen.org.au
- Camp Quality www.campquality.org.au
- Make-a-Wish Australia www.makeawish.org.au
- Children’s Cancer and Leukaemia Group – CCLG (UK) www.cclg.org.uk
- Planet Cancer (USA) www.myplanet.planetcancer.org
- LiveStrong (USA) www.livestrong.org
- Stupid Cancer (USA) www.stupidcancer.org
- Prepare to Live (USA) www.preparetolive.org
- Children with Cancer UK www.childrenwithcancer.org.uk
- Teens Living with Cancer (USA) www.teenswithcancer.org
Stem Cell / Bone Marrow Transplants
- Leukaemia Foundation www.leukaemia.org.au
- Arrow Bone Marrow Transplant Foundation (Aus) www.arrow.org.au
- Australian Bone Marrow Donor Registry www.abmdr.org.au
- Be the Match (USA) www.bethematch.org
- Blood & Marrow Transplant Information Network - BMT Infonet (USA) www.bmtinfonet.org
Transfusion
- Australian Red Cross Blood Service www.donateblood.com.au
- Blood Transfusion www.transfusion.com.au
- Healthinsite (Aus) www.healthinsite.gov.au
- NHS Direct Online (UK) www.nhsdirect.nhs.uk
Womens’ Health
Jean Hailes Foundation www.jeanhailes.org.au