{"id":14788,"date":"2020-09-30T16:14:24","date_gmt":"2020-09-30T03:14:24","guid":{"rendered":"https:\/\/clladvocates.nz\/?p=14788"},"modified":"2020-09-30T16:14:24","modified_gmt":"2020-09-30T03:14:24","slug":"cll-advocates-nz-newsletter-issue-4","status":"publish","type":"post","link":"https:\/\/clladvocates.nz\/?p=14788","title":{"rendered":"CLL Advocates NZ Newsletter Issue 4"},"content":{"rendered":"

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CLL Advocates NZ Newsletter Issue 4<\/h1>\n

[\/vc_custom_heading][vc_column_text]Friends of CLL Advocates NZ<\/p>\n

This month is Blood Cancer Awareness Month, so it was a good opportunity to reflect on collaboration, networking, and resource sharing between CLL Advocates New Zealand and other blood cancer patient support groups, which like us, are working to better understand and treat these disorders, and support those with them.<\/p>\n

A recent and significant example of this is a current, and near complete, project of launching our \u2018CLL Guide for Patients\u2019 booklet. We have worked with and drawn upon the resources of Leukaemia Care, a national UK blood cancer support charity, to adapt their patient booklet for a New Zealand CLL setting. Within the next month CLLANZ will be launching this CLL patient guide. Leukaemia and Blood Cancer NZ (LBC) will also be launching an updated version of their own CLL booklet.<\/p>\n

Education and learning are a major part of the way forward in your CLL journey, so I encourage you to access a copy of our booklet, which will be available in both hard copy and as a PDF download on our website. I\u2019m sure you will find it an informative resource.<\/p>\n

A lot of work has gone into the CLLANZ booklet, and I would like to thank Dr Gillian Corbett, Catherine Isaac, and Heather Phillips for their great work in putting the document together.<\/p>\n

Following on from education and learning, the\u00a0CLLANZ inaugural patient seminar<\/a>\u00a0is this coming month. Three of NZ\u2019s experts on CLL will speak, followed by a panel discussion and questions. This is a joint event with LBC, at the LBC headquarters in Auckland, or on Zoom from anywhere, to be held on Wednesday 14 October. Registration and details can be found on our website\u00a0here<\/a>.<\/p>\n

In support of other\u00a0CLL patient support groups, I want to remind you of the resources and networking available globally\u00a0including groups such as\u00a0PatientPower and HealthUnlocked. These websites have a lot of useful information and their patient networks, while in a global setting, are very active. You can join the\u00a0HealthUnlocked global community here<\/a>, which boasts just under 16,000 members, and access the\u00a0PatientPower CLL online events here<\/a>.<\/p>\n

There are also regular teleconferences, and other educational activities, which we have now started listing on our website\u00a0here<\/a>\u00a0in a new events section. Many of these events are international webinars held at difficult times of the day for most of us here in New Zealand. So, we are working to access recordings of these to share with you to watch on-demand.<\/p>\n

Another CLL group was also recently formed – Doctors with CLL, which I have joined. I will keep you posted on developments here. The umbrella organisation is\u00a0CLLAN<\/a>\u00a0(CLL Advocates Network), based in Europe, and the organisers of the conference I attended in Edinburgh a year ago. CLLAN coordinates the activities of these groups, and there is a lot of information on their website.<\/p>\n

There are a number of other activities also underway that I have shared recently, and which you hopefully you have in your diaries:<\/p>\n