When our 6 year old daughter was diagnosed with Osteosarcoma I was shocked to be told that her prognosis was so poor and that she had less than a 50% chance of surviving longer than 5 years, she survived for 3. There seemed to be an acceptance that this type of prognosis was acceptable.

It cannot be right that the outcome for people diagnosed with a rare cancer has not improved in the last 40 years. However, when you realise that protocols for treating these cancers have not changed it is easy to understand why this is the case. The answer is quite simple, there are very few clinical trials for patients with a rare cancer and oncology drugs, existing or new, are not being used to improve patient outcomes. RareCan has been set up to address this issue.

I love the fact that RareCan is looking to disrupt the status quo of how to drive clinical research by putting power into the hands of the patient.

Why, in this day and age, do we think that it is acceptable that life expectancy for those people diagnosed with a rare cancer has not improved for 40 years. Something needs to change. This is where I believe RareCan can make a difference by challenging the way clinical trials are undertaken.

Who does not want to be part of something that will improve the outcome of people diagnosed with cancer? By being part of the RareCan team I am making a difference and having a positive impact on a group of individuals that have not had the benefit of progress made in proven medical treatment.

I believe that RareCan can make a major contribution to improved outcomes for people diagnosed with a rare Cancer.