CE update - together we are strong

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RDNZ commends the Government on providing our organisation with a direct contact within the Ministry of Health so we can effectively communicate the challenges facing our group. Through this recent link with the MOH we have been able to share the main concerns facing people with rare disorders.

Several key areas of concern from our groups included access to food and essential items, to flu vaccine for main home caregivers and siblings, to having access to their routine health treatments as part of their specific care plans and to access to medicines plus fears over being left behind as an at risk population if they did need help in hospital. 

MOH have confirmed that public health and disability system are still open for business and all vulnerable people can and should be able to access the medical care they require. MOH have stated that it is important that people do not neglect potentially serious health conditions because of concerns around COVID-19 and issued the following statements:

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A petition for a National Rare Disorder Framework has been launched and we will send out more information about this in the coming weeks along with sharing our action plan and toolkit with our support groups next month.

It is time to take rare disorders seriously to ensure equitable health outcomes for everyone. Inclusive planning saves lives, reduces social and health impacts and offer economic savings- so why not do this?

Finally, please stay safe and stay connected during these later stages of lockdown and remain kind to yourself and other bubbles - together we are strong!

Ngā mihi

Lisa Foster