We are seeking representatives for the following roles
College Representatives required for New Zealand Organisation for Rare Disorders: Working group – Rare Disorders Empowerment Portal.
The New Zealand Organisation of Rare Disorders (NZORD) are keen to set up a Working Group of 5 primary care practitioners/nurse practitioners with an interest in developing the Rare Disorders Empowerment Portal. The aim of the portal would be to provide both patient and primary care empowerment of knowledge around rare disorders.
The purpose of the working group would be to determine what primary care want/require out of such a portal. The portal should be:
- easy to navigate
- be part of an existing IT system
- assist with those small percentage of rare disorder patients in terms of accessing information, knowledge
- easily connect with other GPs/nurse practitioners who may have a rare disorder patient/s in their care
- perhaps share known specialist contacts in the field
- show which current clinical trials are underway in specific rare disorders
The working group would decide which of the above should be included, and have a ‘Think Tank’ to come up with any additional ideas.
Initially the working group would meet for a half day meeting (10am-2pm) on a Friday in August, in Wellington, with another full day meeting later in the year. The aim would be to have a tangible way to get the portal up and running with accurate costings around development by January 2017. NZORD would ideally like to present the portal at a mid-year national primary care conference in 2017.
Travel/airfares will be covered by NZORD, and an honorarium would be paid for the time attending these meetings. It would be expected that some voluntary work via email communication would be part of this project be between face-to-face meetings.
If you are interested in being nominated for this working group we would be very keen to receive your application. Please email the Policy Team by 5.00 pm, Monday 25 July with a copy of your CV, and a completed Application Form (which needs to include the contact details of two referees).
Expression of interest