Rare Disorders NZ Provides Vital Voice For Vulnerable Group

People living with rare disorders are vulnerable in the current pandemic and need extra support to ensure their voices are heard. Rare Disorders NZ (RDNZ) commends the Government for ensuring there is a way for this group’s concerns to be heard and needs to be met.

“We must offer our heartfelt praise for the amazing leadership, actions, efforts of Government and policy makers, the dedication of health and social care professionals, and others who are working and facing difficult decisions and exhaustion on the frontline of this COVID-19 pandemic,” says RDNZ Chief Executive Lisa Foster.

“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,” says Lisa.

Rare disorders affect 300, 000 people, around 6% of the population. These conditions are often chronic, highly complex, progressive and severely disabling, and generate specific care needs. Along with other vulnerable groups, the effect of COVID-19 on healthcare and social systems is immense, and directly impacts the care that people living with a rare disease receive, as well as their socio-economic status, education and employment. The need for strong, coordinated and cohesive public health systems that address these needs without allowing people to fall between the gaps has never been greater.

“The collective barriers and issues facing our collective are being heard in order to develop solutions in a responsive manner and to have concerns addressed as part of Ministry planning and not as an afterthought. This is the only way to ensure people with rare disorders are not left behind during this pandemic,” says Lisa.

“We have been working tirelessly to provide a collective voice to the Government to ensure the needs of people with rare disorders are acknowledged. We appreciate the recognition and support of Government at this challenging time.”

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

The Ministry of Health have confirmed that public health and disability system are still open for business. This will be reiterated by Dr Ashley Bloomfield in his daily media briefings, and on his Facebook Q&A session. All vulnerable people including our collective can and should be able to access the medical care they require.

“We congratulate the Government on acknowledging our collective to ensure that the needs of this vulnerable group are not forgotten.” says Lisa. “In this challenging time, RDNZ continues to be an effective voice for the rare disorder community,”

For continued progress following lockdown and the development of a system which acknowledges people with rare disorders, policy change is needed. RDNZ launched the Fair for Rare NZ campaign at Parliament in February, to call for the development of a National Rare Disorder Framework which offers alignment with other developed countries. While the next stage of our Fair for Rare NZ campaign is temporarily on hold, the RDNZ team is continuing to develop materials to send to our collective when the current situation has eased. RDNZ is creating an MP Liaison toolkit to enable people to share their own stories to call for Fair for Rare, as well as guidelines for speaking with media.

“It’s time to take rare disorders seriously to ensure equitable health outcomes for everyone. Rare is part of our communities and deserves to be included as a part of our health and social care system,” says Lisa.

About RDNZ

Rare Disorders NZ (formerly NZORD) is the connector hub and collective voice for patients and families affected by rare disorders. Rare diseases affect 6% of New Zealanders.

There is no acknowledged definition of rare disease in NZ, however RDNZ follows the European Union policy which defines a disorder as rare when it affects fewer than 1 in 2000. More than 6,000 rare disorders collectively affect around 300,000 New Zealanders. Of this number, 50% are children.

www.raredisorders.org.nz

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