Funding to heal & support those with rare-disorders, thinking rare disorder's probably don't get much funding. By running!
Wellington
A rookie looking for adventure (racing), I'm taking on 3 tough 12k challenges + marathon in October.
https://eventpromotions.co.nz/adult-tough-guy-and-gal-challenge
Wellington 28 May * Auckland 6 Aug * Rotorua 27 Aug
I haven't done any specific training & expect them to be painful. What a blessing to know why I'm hurting & that the pain is good!
Let the occasion bring awareness & funds to Rare Disorders NZ, supporting healing & care for the otherwise overlooked ailments.
So if you're up for it and circumstances allow spare a few minutes &/ $'s for a good cause, & get exercising for that good pain!
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In NZ, there are ~300,000, or 1/17 people living with a rare disorder.
You probably know people who have a rare disorder.
A disease~disorder is defined as rare when it affects <1 in 2000 people, & there are >6000 rare disorders.
RareDisorder.org.nz is the only national organisation supporting all New Zealanders who live with a rare condition, & the people who care for them. RDNZ offers a platform & connector hub to link people to information & rare disorder groups specific to their disorder. RDNZ helps people navigate the health system.
RDNZ provides a strong, unified voice to advocate for public health policy & a future healthcare system that works for those with rare disorders. We work with the Government, clinicians, researchers & industry to promote diagnosis, treatment, services & research. RDNZ continues to advocate for a national framework for rare disorders in NZ.
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Thank you so much for your hard mahi in the tough guy & gal challenges Luisa to raise awareness and funds for rare disorders in NZ!
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