Firstly, thank you to everyone who has signed up to RareCan to become a member,
We would not be anywhere without your support and commitment.
As you know, RareCan is a new company set up to accelerate research into rare cancers and over the last 12 months we have been gathering momentum in readiness to do just that.
Some of you may have registered with RareCan some time ago and some of you as recently as yesterday. No doubt you are wondering what will happen next?
In the first instance, you may have felt communication and news from RareCan has been slow, but don’t let that fool you. Behind the scenes we are working at pace building our team, our systems and even getting a BioResource up and running in readiness for research to commence.
We thought it timely to give you some insight into some of the detail and will continue to do so on a quarterly basis. My only request is that you help us when we ask you for feedback. It will help us ensure that the system we have built for you works exactly as you would like it to.
Professor Andy Hall
Chief Scientific Officer
THE RARECAN PLATFORM
When you become a member of RareCan, you are given a username and password so that you can upload your medical information and notes. Very early on we upgraded our platform so that we are better able to support you and your requirements, as well as those from medical and research teams.
We would encourage all of you to log in to your RareCan account firstly to make sure you know how to and familiarise yourself with our improved platform, and secondly to upload your histology reports. If you are not sure how to do this, you can follow the guide we have on the website.
Our next step is to start building our first community pages, specific to cancer types and we will be sharing these with you in the next few weeks/months. We will be sharing designs and information as we go along so any feedback or comments we ask for will be gratefully received.
PROGRESS AND COLLABORATION
Progress with the GIST Cancer Community
As you will be aware, our first target group for research was largely with the GIST Cancer UK and PAWS GIST community and it was a huge success. Many thanks go to Jayne Bressington and her team for helping us to drive the membership.
There are now over 75 members enrolled on the RareCan platform with a form of GIST Cancer diagnosis, and our team is continuing to work with Jayne and her team to move forward with specific research opportunities.
We will keep you updated as these progress.
Building our RareCan BioResource
As RareCan was evolving over the last 12 months, it became apparent that in order to fully support our members we needed to create our own BioResource.
This is where we will hold samples of tissue from our members so that when research opportunities arise, we can easily access the data and information researchers need.
There are very strict rules and governance around how this is established, and our application is currently with the Ethics Committee for sign-off.
Once this has been received, we will be in the exciting position to start collecting tissue samples – a giant leap forward in how we operate.
Building our Support Group Network
We are finding that the best way to engage and onboard members is to work with support groups to recruit people with rare cancer diagnoses.
We are currently engaging with a number of support groups, in addition to GIST Cancer UK, to help us grow our membership over the course of the next 12 months.
If you are involved with a support group linked to a rare cancer, please do get in touch at email@example.com.
Great British Entrepreneur Awards
We are delighted to have been shortlisted as finalists for the 2021 Great British Entrepreneur Awards – Start-Up Entrepreneur of the year.
Andy Hall, Founder & Director, and our Chief Scientific Officer said, ‘Reaching the finals is a great tribute to the fantastic support we’ve had from people affected by rare forms of cancer in helping us launch RareCan.’
Winners are announced in September so watch this space!
WHAT HAPPENS NEXT?
We will aim to make this general kind of update available to you on a quarterly basis. In the meantime, if you would like to share your cancer journey with us, please get in touch – we would love to help you to share your story with the rest of the rare cancer community.
You can follow us on all of our social media platforms, where you can keep up to date with what we are doing week on week. If there is something specific you would like us to do or look at in the future, please do let us know by emailing firstname.lastname@example.org. Your input is incredibly important to us.
A community page giving you access to:
- information about trials
- access to key resources
- opportunities to share your experiences