Newsletter 2018 #4

NZORD Newsletter - August 2018
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In this issue:
  1. Rare is everywhere: Meet William
  2. Fair for rare: Collette's editorial
  3. Updates from our website:
    1. Meet the Kiwi DNA detective helping kids across the world
    2. Treatment funded in Australia, but NZ brother misses out
    3. Folic acid report
    4. Submission to PHARMAC’s Consumer Voice consultation
  4. Guidance on setting up a support group
  5. NZORD funding update
  6. Running for rare disorders
  7. Queenstown Research Week Satellite on Rare Brain Diseases
  8. NZORD AGM 

Rare is everywhere: Meet William

"William is my superhero - 11p14.3 or not he’s a true blessing."

Read William's story

Fair for rare: Collette's editorial

We have been working hard to ensure the issue of equity for people with rare disorders is on the political radar.

Our Relationship Manager, Lisa Crawford and I attended the launch of the National Party Health caucus on 14 August, and spent time with nearly every member including Simon Bridges, Shane Reti, Michael Woodhouse and Maggie Barry. These politicians are very engaged and interested in rare disorder policy work, and next month I will be meeting with Maggie Barry to brief her more fully on the systemic challenges and barriers for people with rare disorders.

I also met with PHARMAC as part of our regular quarterly catch-ups to discuss their call for applications for rare disease medicines. I urged PHARMAC to carefully apply their policy to ensure that the funded medicines do not include antimicrobial medications for infectious diseases (however rare), or any rare disorders that are not currently able to be diagnosed in NZ – as happened in the 2016 rare disorders pilot funding. A new rare disorders subcommittee of PTAC has been convened and they will meet in November to assess the latest application for rare disorders medicines. 

As always, NZORD will continue to represent the patient voice at a national level and bring you information as we receive it. 

Ngā mihi,
Dr Collette Bromhead

Updates from our website

NZORD board member Professor Stephen Robertson is a world-renowned paediatric geneticist.

 

An Auckland family living with a rare genetic disease is pushing for treatment that helps slow its progression to be made available in New Zealand. A new report, commissioned by the Ministry of Health, has concluded that the benefits of mandatory fortification of bread with folic acid outweigh any possible adverse effects. NZORD has been campaigning for mandatory fortification of bread with folic acid for 15 years. 

NZORD believes that ensuring the patient voice is part of the process will make a difference to the health and wellbeing of patients with rare disorders, who are currently institutionally discriminated against through the purchasing process.

Setting up a support group

Do you want to set up a rare disorder support group but are not sure where to start? NZORD can help.
 
NZORD offers newly established support groups advice and links to information that will assist their sustainability and effectiveness.
 
Check our directory first to see if there is an existing group you can align with, then read the information on our guidance webpage.

NZORD funding update

We have signed a new three-year contract with the Ministry of Health, with reduced funding each year.

We are disappointed with the reducing nature of this funding because by year three the Ministry’s contribution will reduce to just 15 cents per rare disorder patient in New Zealand.

Running for rare disorders

Brittany Vining is running her first marathon on 1 September in Kinloch, near Taupo. She wants to help all rare disorders patients so chose to support NZORD.

Brittany is in her final year of a Bachelor of Science, majoring in genetics, with a double major in psychology and sports science. She plans to complete a Masters in Genetic Counselling when she has finished her undergraduate studies.

You can support Brittany’s marathon efforts by donating through her Givealittle page.

QMB Satellite on Rare Brain Diseases

Our CE Dr Collette Bromhead will be speaking at Queenstown Research Week at the end of the month. In her talk she will highlight the value of biomedical research to rare disease patients who may not currently have access to anything other than symptomatic treatments.
 
She will also talk about the need for a national registry for all rare disorders, as well as NZORD's upcoming initiatives to improve connections and collaborations between local researchers.
 
NZORD is sponsoring prizes for the best student presentations to recognise and encourage future rare disease researchers.

NZORD AGM

This meeting of the NZORD board and senior management team will take place on 26 September from 10-10.30am at the Brentwood Hotel, Kilbirnie, Wellington.

 

If you have any feedback or questions please get in touch - amy.watson@nzord.org.nz or 04 385 1119.
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Visit the NZORD Website






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New Zealand Organisation for Rare Disorders · PO Box 9514 · Marion Square · Wellington, 6141 · New Zealand

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