Rare Cancer Alliance
Web: www.rare-cancer.org
The primary purpose of this organisation is to disseminate information and provide support to all paediatric (childhood) and rare cancer patients. Most of the members are patients or survivors. They are not medical professionals. They are people who have had to go through the process of wading through the information (or lack of information) on the internet for their own rare cancer. Their hope is that their organisation and website will save you some precious time and energy.
Their secondary purpose is to offer a consolidated venue to raise awareness and funds for rare cancer research.