Genomic resource centre

Patient support groups

Treatment involves more than routine medical diagnosis, hospitalised care or even the prescription of drugs. When confronted by illness, patients seek professional help and advice from their doctors, and also rely on support from family members, peers and fellow patients. Patients' with genetic diseases are no exception to this reality. They too face complexities and complications that require a network of professional support staff, family, and friends.

To this end several societies and organizations, specialising both in general health improvement as well as illness-specific objectives, offer support groups as integral components of treatment plans for patients with genetic disorders and for their families. These support groups may offer a variety of services, including educational materials, consultations, group therapy, team building activities, and other resources to teach individuals how to cope and adapt to the lifestyle that is often dictated by their illnesses.

This section offers a compilation of online resources from around the world on support groups for multiple illnesses.

Please note that if you do not find a support group for your needs in this listing, you may locate one by contacting your local hospital or genetic labs.

General-health related support groups

  • Doctor's Guide
    Provides disease-related information, facts and news, and contains links to patient support sites and medical journals from all over the world.
  • Canadian Directory of Genetic Support Groups (Canada)
    Offers regional support group listings and information specific to genetic diseases.
  • Disease Support (USA)
    Provides directory of both disease organizations and non-profit volunteer groups that offer consumer support, resources and education about several illnesses.
  • Everybody.co.nz (New Zealand)
    Provides listing of disease-specific support groups, information on multiple diseases, information on health maintenance, tests and treatment, and a broad New Zealand health services directory.
  • Genetics Interest Group (UK)
    Offers general information on genetic diseases along with information on available genetic services in the UK.
  • Genetics Home Reference (USA)
    Offers detailed information on both rare and common genetic diseases to raise awareness and understanding.
  • Genomics and Disease Prevention, CDC (USA)
    Offers regional support group listings and information specific to genetic diseases, as well as interactive learning tools and current news on genomics research.
  • International Alliance of Patients' Organizations (UK)
    Offers a global database of patients’ organizations searchable by various criteria including geographical. Also includes a Patients Network Magazine, a Patients' Exchange (an online area where individuals running or working in patients' organizations around the world can come together to exchange views, share resources, give advice and suppor, and discuss common issues), and a patient-centered healthcare portal (providing information and opportunities for debate on issues relevant to patient-centred healthcare for all stakeholders).
  • Irish Medical Directory (Ireland)
    Offers regional support group listings and information specific to genetic diseases.
  • Medivisionindia.com (India)
    Provides information on support groups, online tutorial for body systems, symptom checks, and diagnostics. Also provides legal advice and taxation tips for doctors.
  • MyhealthCANADA.com (Canada)
    Offers regional support group listings and information specific to multiple illnesses.
  • New York Online Access to Health (USA)
    Offers regional support group listings and information specific to multiple illnesses.
  • Patient UK (UK)
    Offers details of over 2000 self-help groups, patient groups and similar organizations that are fully cross-referenced and investigated annually. Also offers patient information leaflets on health and disease and a recommended list of books on health and disease.
  • The Drs Reference Site (Australia)
    Offers disease-specific information by offering links to Australian medical websites, regional support-group listings, patient information leaflets, and healthcare-related services that include surgery options, first aid instruction/training opportunities and a directory of hospitals.
  • The Patient's Association (UK)
    Offers database of over 1,000 self-help and patient organizations in the UK. Also provides links to campaigns and latest news from The Patient Association in Middlesex, as well as a phone-based helpline.

Disease-specific support groups

Asthma

Cardiovascular disease

Cancer

Cystic fibrosis

Diabetes

Down syndrome

Fragile X disease

Hemophilia

HIV/AIDS

Huntington’s disease

Sickle-cell anemia

Tay-sachs disease

Thalassemia