Expressions of Interest for CLL Advocates positions
These are exciting times for our CLL community as the 'patient voice' becomes an essential factor in determining which drugs receive funding here in New Zealand. We are currently seeking at least one more patient trustee to join our team. While the time commitment is minimal, a strong passion for our cause is highly valued.
At our recent CLL Advocates Trustees meeting, we decided to establish a patient working group, which Diane Ward, a CLL Advocates Trustee, is enthusiastic to lead. This initiative aims to enhance patient input in our advocacy efforts.
World CLL Day is on September 1, a day that holds significant meaning for all of us. We need your support to spread these important messages to as wide an audience as possible. If you are interested in becoming a trustee or a member of the working group, please complete the form below and submit it by 10th August 2024.
Expressions of Interest for CLL Advocates positions
Incidence of Non-Melanoma Skin Cancers in Patients with CLL: A Retrospective Study in Bay of Plenty New Zealand Population
CLLANZ provided some assistance for a research project to be done as a summer studentship, by then fifth year medical student, Andrew Weston, on “second primary malignancies in NZ CLL patients”.
Here is the link to the abstract published at the 63rd ASH (The American Society of Hemotology) Annual Meeting.
Second primary malignancies are important in CLL, where the impaired immune system is not as able to deal to developing malignancies as people with normal immune systems can. As a consequence, about one third of CLL patients die of a second primary malignancy, such as melanoma, colon cancer, and pancreatic cancer. Some of these cancers have well-recognised screening procedures to detect early stage cancers, which can have a better outcome to treatment then, compared to when they are picked up when symptoms develop.
Regular skin checks, and colonoscopy are two good examples of this screening approach.
MyLifeMatters campaign: find an event near you
MyLifeMatters is a collective of patient advocate organisations representing more than 1 million patients with cancers, rare disorders, diabetes, and other life limiting conditions calling for the New Zealand Government to tackle the issue of investment and timely access to new and breakthrough medicines for the people of New Zealand.
At the heart of this campaign lies a shared vision: a New Zealand where every Kiwi patient has the opportunity to lead a healthy life, unhindered by poor investment, and access to life-saving medicines that are available in other countries.
Through awareness, your advocacy, and courage, we aim to shape a brighter tomorrow for patients in Aotearoa.
Please find out how to take action here: My Life Matters Event Dates