Rare Disorders NZ: April Update

CE Update

Change is in the air, and as Chief Executive of Rare Disorders NZ it has been my privilege over the past five years to support increased awareness, understanding and equity for all persons impacted by a rare condition. With a strong team in place and a clear map for the future, now is the right time for me to step into a consultancy role with RDNZ to focus on key areas, while allowing a new CE to steer the ship. I will be looking to deliver meaningful change in New Zealand and abroad by contracting to private industry, NGOs and government agencies, while continuing to support RDNZ through advocacy and international channels.

I offer whole-hearted appreciation for each and every one from the rare community who step forward to share their stories or speak their truth, and I applaud their passion, dedication and effort. It is only ever the power of a unified voice that brings about change!

RDNZ have focused on amplifying this voice, and recently I have met with the Office of the Chief Clinical Officers, who advise the Minister of Health, and connected with the Mental Health Commission about the importance of inclusion of carers and whānau for respite and practical mental health support.

I am thrilled to be preparing for our third and largest ever Rare Beer Event which will be on June 3rd, and excited to deliver a workshop at the GP conference on 'Awareness of Rare Disorders'; this offers the amazing opportunity to educate our clinical professionals about the value of being informed and aware about rare conditions. Such awareness can assist with a timely diagnosis and more supportive care for rare conditions, which is why it is a central theme to most National Frameworks in other countries.

Ngā mihi,

Lisa Foster

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Voice of Rare Disorders White Paper launched

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To mark Rare Disease Day on 28 February, we launched the Voice of Rare Disorders white paper, based on the results of the Voice of Rare Disorders Survey from November 2021.

The results paint a picture similar to the 2019 survey, of isolation, lack of timely diagnosis, poor treatment access, lack of coordinated care, significant carer impact and for many, being lost in the system.

More than ever, the results clarify the need for a comprehensive plan to deliver sustainable improvements in health outcomes for the rare disorder community.

Some of the key findings:

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Raising awareness of rare disorders

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Rare Disorders NZ on Nine to Noon

Lisa Foster, Rare Disorders NZ CE, talked to Kathryn Ryan about the alarming results from our survey and how the NZ health system is failing those with rare disorders.

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Trikafta Petition

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Rare Beer Challenge

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Place: 7 Leeds St, Te Aro, Wellington

Time: From 5pm

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Rare Disorder NZ’s CE Lisa Foster will be attending the next Highest Needs Review Hui this month to represent those with a rare disorder and make sure our voice is included in this review. We will keep you updated on progress and further opportunities to participate.

Mental Health and Wellbeing Submission

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Roadside safety law could affect those with a rare disorder

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The listed drugs are Alprazolam, Amphetamine, Buprenorphine, Clonazepam, Cocaine, Codeine, Diazepam, Dihydrocodeine, Fentanyl, GHB, Ketamine, Lorazepam, MDMA, Methadone, Methamphetamine, Midazolam, Morphine, Nitrazepam, Oxazepam, Oxycodone, Temazepam, THC (cannabis), Tramadol, Triazolam and Zopiclone.

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Global Survey of Rare Disorder Diagnosis

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Rare Disease International, in partnership with EURORDIS Rare Barometer Survey project has launched the Global Survey on the Journey to Diagnosis for Persons Living with a Rare Disease to identify factors that influence the process of obtaining a diagnosis and obstacles along the journey. 

This survey is open to people living with a rare disease and their family members from any country in the world. It is translated in 26 languages.

Rare Disorders NZ will be given the New Zealand outcomes from this survey so please participate and let your voice be heard!

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Rare Disorder support groups

The list of support groups in our collective continues to grow, making our collective stronger and enabling us to connect more people to the right groups.

Please let us know if you hear of support groups that may not know about us so we can connect with them. We want to make sure we can connect as many people as possible to a group for their condition if it exists. Thanks for your help!

New private Māori Facebook group

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The team at Rare Disorders NZ

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