A few members of our team share their experiences with rare cancer and the current state of affairs in cancer research. They explain why they decided to start RareCan and why it matters so much to them and to so many others.
Founder & Director
Having worked with academic researchers, clinicians, pharmaceutical companies and clinical trial organisations, I have seen first-hand the positive impact collaborative research can have in transforming people’s lives through the development of new medicines and treatments.
Behind the scenes, thousands of individuals are devoting their professional lives to reducing or eradicating diseases for the benefit of patients and their families and it is through this work that we will one day, hopefully overcome rare cancer.
In my role as the manager of a programme based in a molecular pathology lab within a busy NHS hospital trust, I have witnessed the huge challenges we face in making this aim a reality. The high-quality human samples needed to develop new treatments can be incredibly difficult to source, particularly for those with the rarest forms of cancer.
I have participated in meetings where the opportunity to undertake potentially ground-breaking research has had to be discounted due to a lack of available samples or where access to samples has had to be limited due to their value and scarcity. This is exceptionally difficult to reconcile when I have met patients and their loved ones within our communities who are willing to participate in clinical research if the opportunities exist.
I strongly believe we have to do everything in our power to support their engagement in research and to ensure our research community is in the best possible position to carry out their valuable work. By establishing RareCan, we are actually making this happen.
It is heart breaking for people who are diagnosed with rare cancers to discover how little research is being done to drive new treatments for their conditions, for which the survival statistics are often bleak. At the same time researchers are frustrated: they tell us that they want to work on rare cancers but are unable to put together meaningful cohorts of patients to be able to attract funding and conduct the research.
I am really excited to be involved in RareCan as it offers a compelling solution to this needless dilemma, a way to bridge the gap between the patient and research communities, which is holding back the possibility of progress. I am honoured to be part of this initiative because of the incredible level of personal commitment to improving outcomes for cancer patients that everyone in the RareCan team has. The enterprise is so much more than just a job for us all – it is a mission.
That commitment applies not just to our determination to improve outcomes for people with rare cancer but also to ensuring that the way we do so is the best we can make it. It is especially important to me that RareCan takes the responsibility to protect our members’ data with the utmost seriousness and our systems are designed to ensure that members will always have access to and be able to control how and where it is used. This has been a priority for the team from day one – long before anyone signed up – and will remain so.
Founder & Director
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.