Rare Disorders NZ Fair for Rare support group June update

17 June 2021

Paula Tesoriero, Disability Rights Commissioner meeting: 

Rare Disorders NZ along with representatives from four rare disorder support groups will be attending a meeting with Paula Tesoriero, Disability Rights Commissioner, next week to discuss where rare disorders fit within disability. If you have any questions or comments your group would liked discussed please send them to [email protected]

Rare Disorders NZ letter to the New Zealand Ambassador to the UN:

Rare Disorders NZ has written to Craig Hawke, NZ Ambassador to the UN, to request New Zealand adopt the UN resolution on addressing the challenges of people living with a rare disease and their families. You can read the letter on our website. 

We would encourage your support group to also write to the Ambassador. To make this as simple as possible you can find a template letter on our website. Please let us know if your support group will be sending a letter.

GPCME Rotorua: Last week our Chief Executive, Lisa Foster, attended the annual GPCME in Rotorua to represent the rare disorder community. You can read more here.

Rare Disorder support group resources: This website has resources and free online workshops suitable for support groups including capability building, board governance and media management.

Rare Disorders NZ Survey: If you have not already completed this survey please help us to improve our service. This survey is for rare disorder support group leaders to complete. There are ten questions in this survey, which we estimate will take approximately three minutes to complete.

Thank you in advance for your valuable insights. Your input will be used to ensure we continue to work together to amplify the voice of the rare disorder community. Click here to complete the survey.

Changers to family carers payments meeting hosted by Carers NZ:

Thank you to Vivienne from rare disorder support group ALD who attended a meeting organised through Carers NZ about changes to family and carers payments to represent those with a rare disorder.

“For me having a son with a rare disorder has its own unique set of challenges, removing red tape and acknowledging parents as caregivers will be a step in the right direction. Parents want their children to thrive, not survive.” Vivienne

Extension of the Sick Leave Bill: We had 12 individuals or rare disorder support groups make submissions to the extension of the sick leave bill and from that Lisa and three other people were asked to represent their rare disorder support groups and make an oral submission. The purpose for us to get involved with this bill was to get our collective in front of government officials: This bill has now been passed.

Rare Disorder Support Group MSA meeting with Dr Liz Craig: Multiple Systems Atrophy (MSA) is a neurodegenerative condition with an average prognosis of nine years. Common symptoms are muscle coordination problems, ataxia (unsteady gait and loss of balance), slurred or slow or low-volume speech, extreme fatigue and visual disturbance. In most parts of NZ, MSA patients come under the care of Parkinson's NZ although an MSA Trust

Dr Liz Craig MP, who chairs the Health Select Committee, recently visited Gisborne. “Whilst she could not discuss directly the impact that the Fair for Rare NZ petition has had on Government policy at this stage, she seemed generally sympathetic to efforts by Rare Disorders NZ to get a framework for diagnosis, treatment and care." Stephen from MSA If anyone in your support group would like to visit your local MP to raise awareness for rare disorders please contact us, we have template letters and information packs available. [email protected]

PHARMAC review: Our rare disorder medicine access group have started to collate information to present to the PHARMAC review panel to represent those with a rare disorder that have a barrier within the current PHARMAC system. We will keep you posted on when this will happen.

We would encourage your group or individuals within your group to make a submission to the review you can do so on this link. We have some template suggestions if you would like father information before making a submission please contact Kim - [email protected] Note that submissions are open to 16 July.

Office for Disability Issues survey: The Office for Disability Issues (ODI) is looking for feedback on the implementation of the New Zealand Disability Strategy, by connecting the disability sector and government agencies, and progressing issues that are important to disabled people.

ODI have created a survey to help measure the results. The feedback is much more than an accountability mechanism, it provides the opportunity for ODI to learn from the feedback provided. This should take around six minutes, with opportunities to expand on areas you choose. The survey is open until June 30. If you have any questions, please feel free to contact [email protected]

Alone we are rare; together we are strong!

Kind regards,

Kim McGuinness