About CLL Advocates NZ

A number of New Zealanders with CLL are alive and well today because they’ve been able to access life-saving therapies. They’ve survived either through good fortune (compassionate access programmes or clinical trials) or because they were able to pay for treatment themselves. They are enjoying fulfilling and productive lives. Others have not been so fortunate. CLL Advocates NZ exists to draw attention to and address this fundamental inequity.

Read our Trust DeedMeet our Trustees

Who we are

We are a group of individuals affected by CLL and medical specialists active in the treatment of CLL, who want to:

  • empower patients to advocate for and gain access to world-class treatments for CLL
  • build public knowledge and understanding of the potential of modern CLL therapies to transform and save lives
  • encourage the development of NZ guidelines to ensure equitable access to best practice treatment for all CLL patients, irrespective of geographic, ethnic or socio-economic differences
  • promote and support NZ-based research on CLL, including the value and importance of developing and participating in clinical trials, and improving the quality of NZ data on CLL
  • build awareness of accessibility and funding models in use in comparable countries, and
  • form connections internationally with other CLL patient groups and advocates

We’re committed to complementing the work of other organisations engaged in supporting and advocating for people living with CLL, rather than duplicating the information and services they provide. We are therefore proud to have made connections – formal and informal – with a number of these organisations.

CLLANZ has been accepted as a member of this international network founded by representatives from Canada, Czech Republic, France, Ireland, Italy, Portugal, UK and the United States. CLLAN is hosted by LePaf (Leukaemia Patient Advocates Foundation) a patient-led non-profit foundation based in Switzerland.

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This organisation, also a member of CLLAN, has generously allowed us to access their excellent CLL patient information booklet, and tailor it for New Zealand use (see it here). Their booklet is being updated later this year and we will update ours in sync with that. We’re most grateful to Leukaemia Care for enabling us to access this great resource.

Visit website

Patient Power is a service set up to connect patients and their caregivers to the knowledge of an active community of cancer experts and patient advocates across a wide range of cancers. Through video interviews, online forums, blogs and webcasts, it covers everything from the latest research and treatment news to shared patient stories and strategies for coping with cancer in your everyday life. We will feature links to their material from time to time, but we encourage you to join Patient Power’s online CLL community and subscribe to their frequent email alerts and blogs. Patient Power is based in Seattle and was founded by two health communications pioneers, Esther and Andrew Schorr (himself a CLL patient).

Join online community