| Support Groups Canadian Retinoblastoma Society www.rbsociety.ca Provides information and support for families and individuals dealing with Rb. Organises symposiums and social activities and distributes resources about Rb. New England Retinoblastoma Support Group New England Retinoblastoma Parents Support Group, P.O. Box 317, Watertown, MA 02272 Telephone: 1-800-562-6265 A regional; organisation, providing emotional and practical support for retinoblastoma families. Shares of Information and resources. organises referrals, offers telephone support, conferences and advocacy. Retinoablastoma of Arizona (RBAZ) www.rbaz.org A small and active not-for-profit support group serving families affected by Rb in Arizona. RBAZ was established in 2001 after several AZ families met via an Rb e-group. The group now meats approximately each month for social activities and support sharing. Retinoblastoma International (RBI) www.retinoblastoma.net www.kidseyecancer.org Based at the Children's Hospital of Los Angeles, RBI campaigns for standard early testing of infants, and funds valuable research and provides hope for families. The website contains information sheets on various aspects of Rb, as well as survivor stories. The United Kingdom Childhood Eye Cancer Trust (formerly the UK Retinoblastoma Society) www.chect.org.uk The first national Rb related organisation in the world, CHECT provides support for Rb families around the world. It hosts an annual family day and offers support across the country through a network of regional family contacts. CHECT also supports a play specialist serving Moorfields and the Royal London Hospitals. The website has an in depth explanation of rb, it's treatments and genetics. E-groups To read an artilce about e-groups maintained by the Association of Cancer Online Resources ACOR, click Retinoblastoma Specific E-groups KidsEyeCancerFriends http://groups.yahoo.com/group/KidsEyeCancerFriends/ Discussion group of Retinoblastoma International. R-blastoma http://listserv.acor.org/archives/r-blastoma.html Discussion group for families, maintained by an bilateral Rb survivor at the Association of Cancer Online Resources. RB-Survivors http://listserv.acor.org/archives/rb-survivors.html Discussion group for survivors, maintained by an bilateral Rb survivor at the Association of Cancer Online Resources. Other Relevant E-groups Ped-Onc: The Paediatric Cancers Online Support Group http://listserv.acor.org/archives/ped-onc.html Founded and maintained at ACOR, the Association of Cancer Online Resources. RARE-CANCER: The Rare Cancers Discussion Group http://listserv.acor.org/archives/rare-cancer.html Founded and maintained at ACOR, the Association of Cancer Online Resources. EducatingBTKids - Educating Brain Tumor Kids http://groups.yahoo.com/group/EducatingBTKids/ An education resource forum for teachers, parents, and social workers on the subject of educating children with Brain Tumors. This forum also has useful information for parents and teachers of children with Rb, particularly those who may have received radiotherapy as part of their treatment package. The BRAINTMR list. http://www.braintrust.org/services/support/braintmr/ Maintained by The Brain Trust, this is quite possibly the busiest and most comprehensive brain tumour email list on the internet. Ped-ONC Survivors http://listserv.acor.org/archives/ped-onc-survivors.html Founded and maintained at ACOR, the Association of Cancer Online Resources. LT-SURVIVORS: Cancer Long Term Survivors Discussion Group http://listserv.acor.org/archives/lt-survivors.html Founded and maintained at ACOR, the Association of Cancer Online Resources. Last updated: 31 July, 2004.. |
| "Do not go where the path may lead, go instead where there is no path - and leave a trail." ~ Ralph Waldo Emerson ~ |
| Retinoblastoma Support Groups and online communities. |
| ORPHANS OF THE CANCER STORM |
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| OCS maintains an international directory of contact details for families and survivors affected by rb. This is a password protected area of the website. If you would like details of how to access the directory, please email Abby. |