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Further resources and links
There are many websites that have information relevant to people living with leukaemias, lymphomas, myeloma and related blood disorders. If you need to discuss or get more information about what you have found on any of these websites speak with your specialist, nurse or allied health professional.
Some sites offer online forums. You can put forward a question or try to find someone in a similar situation. You will need to check that the information is credible by checking who prepared the information, what sources were used and see if there is a date.
Leukaemia-related websites
- Children with Leukaemia (UK) - www.leukaemia.org
- The Leukaemia & Lymphoma Society (US) - www.leukemia-lymphoma.org
- Leukaemia Research Fund (UK) - www.lrf.org.uk (Excellent information for the less-common diseases)
- Chronic Myeloid Leukaemia European Support Group (UK) - www.cmlsupport.org.uk
- CLL topics (US) - www.clltopics.org
- CLL Forum (US) - www.cllforum.com (Online chat forum for CLL patients)
Other websites with information about leukaemias
- Association of Cancer Online Resources (US) - www.acor.org (99 electronic mailing lists, chat rooms/bulletin boards for people with all different blood and bone marrow cancers)
- Cancer BACKUP (UK) - www.cancerbackup.org.uk (Good sections on transplants and the various therapies used, as well as advice about talking to children)
- Cancer Council of Australia - www.cancer.org.au
- American Cancer Society - www.cancer.org
Myeloma-related websites
- Myeloma Foundation of Australia Inc - www.myeloma.org.au (Australian organisation which offers information, education and support and access to expert Myeloma nurses)
- International Myeloma Foundation (US) - www.myeloma.org
- International Myeloma Foundation (UK) - www.myeloma.org.uk
- Multiple Myeloma Research Foundation (US) - www.multiplemyeloma.org
Other websites with information about myeloma
- Association of Cancer Online Resources (US) - www.acor.org (99 electronic mailing lists, chat rooms/bulletin boards for people with all different blood and bone marrow cancers)
- Cancer BACKUP (UK) - www.cancerbackup.org.uk (Good sections on transplants and the various therapies used, as well as advice about talking to children)
- Cancer Council of Australia - www.cancer.org.au
- American Cancer Society - www.cancer.org
- Leukaemia Research Fund (UK) - www.lrf.org.uk (Includes information about multiple myeloma)
- The Leukaemia & Lymphoma Society (US) - www.leukemia-lymphoma.org (Includes information about multiple myeloma)
- Amyloidosis Australia - www.amyloidosisaustralia.org
- Amyloidosis Support Network - www.amyloidosis.org (US) - global education and support site
Lymphoma-related websites
- Lymphoma Support & Research Association - www.lymphoma.org.au (An Australian support and research group site with good information about lymphoma)
- The Leukemia & Lymphoma Society (US) - www.leukemia-lymphoma.org (materials are also available in other languages)
- Lymphoma Research Foundation (US) - www.lymphoma.org
- Lymphoma Association (UK) - www.lymphoma.org.uk
- Leukaemia Research Fund (UK) - www.lymphoma-net.org (Specific for Non-Hodgkin Lymphoma. Includes lists of questions to ask health professionals)
Other websites with information about lymphomas
- Association of Cancer Online Resources (US) - www.acor.org (99 electronic mailing lists, chat rooms/bulletin boards for people with all different blood and bone marrow cancers)
- Cancer BACKUP (UK) - www.cancerbackup.org.uk (Good sections on transplants and the various therapies used, as well as advice about talking to children)
- Cancer Council of Australia - www.cancer.org.au
- American Cancer Society - www.cancer.org
See the other resources and links pages in the Leukaemias, Lymphomas, Myelomas, and Related blood disorders sections for more website links, including information on coping with these diseases, transplants and statistics.
Related blood disorders websites
- Amyloidosis Australia - www.amyloidosisaustralia.org
- Amyloidosis Support Network (US) - www.amyloidosis.org global education and support site
- Aplastic Anemia & MDS International Foundation (US) - www.aamds.org
- Primary Immunodeficiency Association (UK) - www.pia.org.uk (For immune disorders, e.g. Hypogammaglobulinaemia)
- Myelodysplastic Syndromes Foundation (US) - www.mds-foundation.org
- International Waldenstrom’s Macroglobulinemia Foundation (US) - www.iwmf.com
- ‘WMozzies’ - health.groups.yahoo.com/group/WMozzies/ (An email support group for Australasian members of the International Waldenstrom’s Macroglobulinemia Foundation)
Other websites with blood disorders information
- National Organisation for Rare Disorders (US) - www.rarediseases.org
Transplants information websites
- Sydney Cord Blood Bank - www.sch.edu.au/departments/acbb (Part of the Sydney Children’s Hospital Randwick; information about donating cord blood for transplants)
- Blood and Marrow Transplant Information Network (US) - www.bmtinfonet.org
- Arrow Foundation - www.arrow.org.au
- Australian Bone Marrow Donor Registry - www.abmdr.org.au (Includes a good brochure about the donor process)
- National Marrow Donor Program (US) - www.marrow.org (Good BMT and stem cell transplant info. Also contains information in other languages)
Specific age groups
- Camp Quality - www.campquality.org.au
- CanTeen - www.canteen.org.au (The Australian organisation for young people living with cancer)
- Captain Chemo - www.royalmarsden.org.uk/captchemo (Interactive site designed to educate children about chemotherapy)
- Challenge Cancer Support Network - www.challenge.org.au
- Children with Leukaemia (UK) - www.leukaemia.org
- Children’s Cancer Web - www.cancerindex.org/ccw/guide2oz.htm (Guide to Australian websites for children)
- My Parent’s Cancer (US) - www.myparentscancer.com.au (For 13-19 year olds with a parent with cancer)
- After Cure (UK) - www.aftercure.org (For surviviors of childhood cancer)
- Children’s Cause for Cancer Advocacy - www.childrenscause.org (Addressing the survivorship and quality of life of childhood and young adult survivors by expanding resources for research and treatment and aftercare support)
Resources for Adolescents and Young Adults (AYAs)
- CanTeen - www.canteen.org.au (The Australian organisation for young people living with cancer)
- I’m too Young For This - imtooyoungforthis.org (An extensive resource guide for AYAs which links into many different sources of information and support)
- Planet Cancer - www.planetcancer.org (interactive website with a forum for AYAs)
- The Lance Armstrong Foundation Youth Alliance - www.livestrong.org/site/c.jvKZLbMRIsG/b.865471/k.B49/Young_Adult_Alliance.htm
- Prepare to Live - www.preparetolive.org (support network for 20-35 year olds)
- Teens Living with Cancer - www.teenswithcancer.org
- Look Good Feel Better - www.lgfb.org.au (An Australian program that runs skin and hair care and fun workshops to overcome changes in appearance)
- Cancer and Fertility - www.cancerandfertilitysociety.org (A network of surgeons, gynaecologists, oncologists and fertility experts conducting research and educational activities related to cancer and infertility)
Caring for others
- Carers Australia - www.carersaustralia.com.au (with links to state/territory - based websites)
- Young Carers - www.youngcarers.net.au
- Living Caring Working - www.livingcaringworking.com
- Working Carers Support Gateway - www.workingcarers.org.au
Alternative and complementary therapies
- National Center for Complementary and Alternative Medicine (US) - altmed.od.nih.gov (A responsible look at issues relating to complementary and alternative therapies)
Grief, loss and bereavement
- Australian Centre for Grief and Bereavement - www.grief.org.au
- AARP Grief and Loss (US) - www.aarp.org/families/grief_loss
- Bereavement Care Centre - www.bereavementcare.com.au
- Good Grief - www.goodgrief.org.au
- National Association for Loss and Grief South Australia - www.grieflink.asn.au
Fertility & Sexuality
- Cancer and Fertility - www.cancerandfertilitysociety.org (A network of surgeons, gynaecologists, oncologists and fertility experts conducting research and educational activities related to cancer and infertility)
- Fertile Hope - www.fertilehope.org (information regarding cancer and fertility)
Other useful cancer-related websites
- Cancer voices NSW - www.cancervoices.org.au
- Australia Cancer Institute - www.cancerinstitute.org.au
- Cancer Institute NSW - www.health.nsw.gov.au/cancer_inst (Resource directories for patients and carers)
- Australian Community Care Services - www.facs.gov.au
- Arrow Foundation - www.arrow.org.au (Bone Marrow Transplant Foundation)
- Look Good Feel Better - www.lgfb.org.au (A national program that runs skin and hair care and fun workshops to overcome changes in appearance)
- Australian Bone Marrow Donor Registry - www.abmdr.org.au
- Association of Cancer Online Resources - www.acor.org (99 electronic mailing lists, chat rooms, bulletin boards for people with all different blood and bone marrow cancers)
- Can Survive - www.can-survive.org (national site offering 24 hour moment of need telephone counselling service)
- Virtual Cancer Centre - www.virtualcancercentre.com (Register as a patient or medical professional for free at this Australian site)
- National Cancer Institute (US) - www.cancer.gov/cancerinfo/eatinghints (A great site on eating hints for cancer patients before, during and after treatment)
- Virtual Medical Centre - www.virtualmedicalcentre.com
- The Lance Armstrong Foundation - www.livestrong.org (Tools for cancer survivors)
- - www.cancernet.nci.nih.gov/cancertopics/eatinghints (Good eating hints and dietary info for cancer patients before, during and after treatment)
- BC Cancer Agency (CA) - www.bccancer.bc.au
- Make-A-Wish Australia - www.makeawish.org.au
General health information websites
- HealthInSite - www.healthinsite.gov.au (An Australian Government website)
- NICS Guide to the Cochrane Library - www.nicsl.com.au/cochrane (Also an Australian Government initiative)
- Australian Red Cross Blood Service - www.donateblood.com.au (An Australian Government website)
- NHS Direct Online (UK) - www.nhsdirect.nhs.uk
- Canadian Health Network (CA) - www.canadian-health-network.ca
- Medline Plus (US) - www.medlineplus.gov
- National Institute on Aging - www.nia.gov
