Rare diseases: Increasing awareness for better patient outcomes

Posted: Wednesday, February 13, 2013 12:00 am | Updated: 2:31 am, Wed Feb 20, 2013.

(BPT) - Getting a diagnosis of any cancer can be frightening, but for those diagnosed with a rare cancer, the emotional toll can be much worse. For some of these patients, the journey to a correct diagnosis may take years, and once they receive an accurate diagnosis, it can be extremely difficult for these patients to find accurate information on their disease. One of the first things patients do is research everything they can about their illness, including connecting with someone who is also living with the disease, and learning their options for disease management and treatment.

To help spread awareness for lesser known and potentially life-threatening diseases, hundreds of patient organizations across more than 60 countries will join together on Feb. 28, to observe the 6th annual international Rare Disease Day. On this day, patient groups will host events around the world to celebrate those living with and managing their diseases.