WMozzies Advisory Group 2013-
In 2013 Colin had taken up permanent residence in the US and he passed over leadership to Australian domiciled WMozzies.
A new Australian Advisory Group was announced in July 2013. The new Advisory Group met with WMozzies members in Sydney on 24 October 2013 to listen to their patient concerns and matters needing to be addressed. The Group also met that day with the Leukaemia Foundation of Australia on advocacy issues confronting WMozzies.
Principal focus was on initiatives to enhance Australian WM best patient treatment and funding.
Other areas being addressed by the Group included:
- Organisation of suitable meetings and forums for WM patients and carers as well as WM patient support activities and the website;
- Identification of WM specialist haematologists and hospitals experienced in treating our orphan disease (IWMF has already published an Australian specialist list);
- Facilitating financial donations to support WM research scholarships and fellowships;
- Reviewing treatment options available to identify any shortfalls from WM world-best practice;
- Active advocacy to assist initiatives to widen PBS (pharmaceutical benefits scheme, funded by the government) coverage to provide funding of world-best WM treatments in Australia.
The initial members of the group still continuing are Peter Carr (Qld), Peter Marfleet (then Vic now WA) and Andrew Warden (NSW).