Five years ago I joined raredisorders.org.nz as a volunteer on 'Fair for rare' - our campaign to get the Ministry of Health to establish a national strategy for rare disorders.

Today I met with Ministry officials, as chair of our small charity, to schedule the consultation process and establish the methodology to write it.

I mean, this role is hard, but there *are* good days.

#RareDisorders #RareDisease

Rare Disease month is coming up in March, and it's time to dispel a few myths. Having a rare disease is not uncommon. There are more people in Aotearoa with a rare disease than the population of Wellington.

Even so, the voice of rare is largely missing from the health reforms, and that's something myself and thousands of others are working to change.

Learn more at https://raredisorders.org.nz

#Healthcare #RareDisorders #RareDiseaseDay

[Automatic repost https://twitter.com/dystobot/status/1609887291412979715]

RT @rarediseasesss: #brainillnesses and altered #brainfunction structure may be primarily due to #seizures #temperamentchanges #tumours and #infections
#RareDisorders
#AlzheimersDisease
#BrainTumour #CerebralPalsy #Dementia
#DuchenneMuscularDystrophy #Dystonia
#Worldrarediseases2023 #february2023 https://t.co/yzPbVnnlGc

Along with some other advocates I met with the senior team at Te Aka Whai Ora (Maori health authority) this week to discuss building greater equity and access to support for those with a rare disorder.

They were amazing. A completely different energy than the chaotic indifference of the Pakeha systems we've been interacting with, a deep (in their bones) understanding of equity issues, and a keen awareness of the social determinants of health. Also, genuine compassion.

#raredisorders

Having a huge day today at the Rare Disorders NZ Support Group Leads Hui.

Amazing people, and amazing stories of hope, resilience, and compassion.

#raredisease #raredisorders #supportgroups #healthcare

Definitions count, because with no clear and agreed upon idea of who does and doesn't have a rare disorder there's no good way of connecting services like disability support, specialists, mental health services and more.

You know what also counts? Data. We have very little data about the prevalence of Rare Disorders in NZ. So to recap: no definition, no data, no coordinated care = deep inequities in length & quality of life.

#raredisease #raredisorders