#raredisorders — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #raredisorders, aggregated by home.social.
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Walking Corpse Syndrome: Inside the Rare Cotard’s Delusion That Makes People Believe They’re Dead #CotardsDelusion #WalkingCorpseSyndrome #RareDisorders #PsychologyFacts
#MentalHealthMystery #UnbelievableButTrue #DarkPsychology #MindMysteries #MedicalMystery #StrangeButTrue #DidYouKnow #truefacts https://www.gsnsp.com/walking-corpse-syndrome-cotards-delusion/ -
Today is international #RareDiseaseDay so go find someone rare and give them a hug (consensually, of course). In NZ alone there are more than 300,000 rare people (6% of the population) + their families and carers on top of this. It's much less rare than you think.
You can also give money. It won't surprise you to learn that Rare Disorders NZ's contract with the Ministry Of Health has shrunk in recent years and doesn't cover a fraction of the work they do coordinating research, policy input, operating a support line, connecting support groups, and educating health professionals.
Please consider giving $28 this 28th Feb.
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One of my last acts as an NZ-based health advocate for rare disorders is being the first guest on the 'Rare Aware' podcast hosted by my friend Alanna. I can't remember what we talked about exactly, and I don't think I can bring myself listen to me speak for an hour but apparently there are some good nuggets in here about advocacy in general, and creating change.
I have hope for the future. That's weird, I know, given the current state of things. Hope resides in the potential of our communities to create positive futures. Hope requires resolve, pragmatism, and hard work to become reality - but while that potential exists, then so does my hope - even in these challenging times.
https://www.buzzsprout.com/2546745/episodes/18007843-the-power-of-advocacy-james-mcgoram
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https://www.europesays.com/uk/128578/ New test speeds up diagnosis of rare genetic diseases in children #BloodTest #EarlyTreatment #GeneMutations #GeneticDiseases #Genetics #InfantHealth #MitochondrialDisease #NonInvasiveTesting #RapidDiagnosis #RareDisorders #Science #UK #UnitedKingdom #UniversityOfMelbourne
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Baby Is Healed with First Personalized Gene-Editing Treatment
https://www.nytimes.com/2025/05/15/health/gene-editing-personalized-rare-disorders.html
#HackerNews #Baby #GeneEditing #Health #PersonalizedTreatment #RareDisorders
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More than 20 years ago, the idea of developing a national health strategy for Rare Disorders in NZ was floated. Five years ago I joined the campaign to make it a reality. Today, Manatū Hauora ( the Ministry of Health) finally published it.
This is huge. It will likely not make the media today, but the impact will be felt for decades to come. I'm feeling rather emotional.
#RareDisease #RareDisorders #Healthcare
https://www.health.govt.nz/publication/aotearoa-new-zealand-rare-disorders-strategy
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An application was made on my behalf a few years ago for treatment of my metabolic disorder. I was outwardly well, and treatment would have stopped me ever developing symptoms.
It was declined, because I was not sick enough to warrant intervention.
Another application was declined a few years later. The reason? My symptoms had progressed to a point treatment would no longer be effective.
We have to change the way we provide healthcare.
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Just did a live interview on breakfast TV about the development of NZs first rare disorder strategy, then had a quick chat to the incoming Prime Minister in the green room.
Not my normal morning routine, but hopefully I made sensible noises about our work!
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Kia ora good mastodon folk. A rare plug from me for you to fill something in. The Rare Disorders NZ survey is open now and we need as many respondents as possible.
If you have a rare disorder, or care for someone who does, please fill this out. The survey results have real significance, and are used to influence decision making across government.
Here's more information: https://www.raredisorders.org.nz/about-rare-disorders/voice-of-rare-disorders-survey-2023/
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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.
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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.
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Having a huge day today at the Rare Disorders NZ Support Group Leads Hui.
Amazing people, and amazing stories of hope, resilience, and compassion.