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#RareDisease

1 post1 participant0 posts today
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Kōtare :tinoflag:

When we talk about rare diseases the word 'rare' can be very misleading. It makes it seem like only a small group of people are affected.

The reality is quite different.

NZ has a population of 5 million people. Of those, more than 300,000 have a rare disorder or disease - often undiagnosed. Collectively, that's a larger vulnerable population than those with diabetes.

Resources for the care of rare, however, are miniscual 1/n

#RareDiseasesDay #RareDisease

raredisorders.org.nz

Rare Disorders New ZealandAmplifying the collective voice of New Zealanders with rare disordersRDNZ is the only umbrella group for rare disorders in New Zealand and provides a strong common voice to advocate for an equitable healthcare system that works for the 300,000 Kiwis with a rare condition.
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Visions of Napa

Rare Diseases Day is February 28th.

Over 6000 rare diseases are characterized by a broad diversity of disorders and symptoms that vary not only from disease to disease but also from patient to patient suffering from the same disease.

The long-term cause of the Rare Disease Day campaign is to achieve equitable access to diagnosis, treatment, health and social care and social opportunity for people affected by a rare disease.

#RareDiseasesDay #RareDisease #HealthcareIsAHumanRight

rarediseaseday.org/what-is-a-r

The photo has print saying: I support Rare Diseases Day, rarediseaseday.org, 28 FEB 2025. It also has the Rare Diseases Day logo of a person inside the palm of 3 outstretched hands.
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Abishek_Muthian

Every year during February my wife's NGO (gne-myopathy.org/) conducts rare diseases awareness program called #febrareuary to coincide with the rare diseases day (last day of Feb).

This febrareuary we're depicting rare diseases through comics.

This comic is titled 'Diagnosis'.

Diagnosing a rare disease can often be a big struggle - taking many years and involving multiple misdiagnoses.

This is my life story.

Panel 1: * The first panel shows a doctor is sitting at his desk wearing a stethoscope. * The patient a small boy sits across from him, looking concerned and has a cast over his left hand. * Speech bubble for the doctor says "You definitely have stress related fractures". * The calendar behind the patient shows the year as 1995. Panel 2: * The second panel shows the doctor with bigger tummy, standing and putting the cast on the right hand of the patient. * Left hand of the patient is still covered with a cast and the patient looks sad. * Speech bubble for the doctor says "It could be a vitamin-D deficiency". * The calendar behind the patient shows the year as 2002. Panel 3: * The third panel shows the aging doctor holding a X-ray and facing the patient. * Speech bubble for the doctor says "I think it may be achondroplasia". * The patient is aged a bit but still small, has all the limbs covered with casts and looks surprised. * The calendar behind the patient shows the year as 2010. Panel 4: * The aged doctor is scratching his head looking genetic test report. * The genetic test report reads "COMP8 gene mutation resulting in Multiple epiphyseal dysplasia/ Pseudoachondroplasia". * The patient, still same size is covered from head to toe with casts like an Egyptian mummy. * Year behind the doctor says 2015.
#disability#raredisease#comics
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Kōtare :tinoflag:

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

health.govt.nz/publication/aot

Ministry of Health NZAotearoa New Zealand Rare Disorders StrategyThe Aotearoa New Zealand Rare Disorders Strategy sets out the direction for the health system to better support people and their whānau living with rare disorders. It provides a framework and long-term priorities that will guide health entities in improving health and wellbeing outcomes for people and their whānau with rare disorders over the decade of 2024 to 2034.
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Kōtare :tinoflag:

Manatū Hauora (Ministry of Health) will publish the Rare Disorders Strategy later this week. I'm reading through an advance copy at the moment.

It's not perfect, we did not get everything we were hoping for, but it is significant and has been deeply informed by the voice of rare people. I am in awe of the many folks I've fought alongside to get to this point - some facing deep personal challenges, some no longer with us.

It's going to be a good week - my sketchy heart be damned.

#RareDisease
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Kōtare :tinoflag:

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.

#rareDisorders#Healthcare#disability
Public
Broadwaybabyto

I’ve been feeling a lot of grief this weekend after reading about Professor Amit Patel - a nationally recognized doctor & expert in the rare disease HLH - who died in hospital when medical staff refused to acknowledge his expertise in his own condition.

Many disabled and chronically ill individuals know how dangerous hospitals can be - but reading about a doctor (who had a spouse who was also a physician advocating for him) being unable to get the care he needed to stay alive? It’s terrifying.

I wrote about his death, my own experiences with medical trauma and the need for a safer system for all.

open.substack.com/pub/disabled

Photo of Prof Amit Patel with his children. White text overlay reads the following: Professor & Expert in Rare Disease HLH Dies after Medical Staff Ignore his Expertise A look at the death of Prof Amit Patel and the very real problem of medical gaslighting, neglect... DISABLEDGINGER.SUBSTACK.COM
#Disability#ChronicIllness#RareDisease
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ZANitebug

I have Pigmented Villonodular Synovitis, or #PVNS. It's a tumor in my knee that causes swelling and over the long term, joint degeneration, including bone, ligament, and tendon breakdown. I've had this for many years and have chosen not to do the repeated surgeries and radiotherapy usually required. But some days the #pain just really gets to me. I'm used to #ChronicPain but there are days I struggle with it. Using the pain as a reminder to educate #RareDisease #coping rarediseases.org/gard-rare-dis

National Organization for Rare Disorders · GARD Rare Disease Information - Pigmented villonodular synovitis - National Organization for Rare Disorders
Continued thread
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RiffReporter

Neue Medikamente für seltene Krankheiten haben gegenüber älteren Therapien oft keine Vorteile. Betroffene und Ärztïnnen erfahren das aber nur spät oder nie, weil die neuen #Medikamente auf dem Arzneimittelmarkt bevorzugt werden: riffreporter.de/de/wissen/medi #RareDisease

RiffReporter · Seltene Krankheiten: Neue Medikamente oft nicht besser als die StandardtherapieBy Iris Hinneburg
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𝓥𝓲𝓬𝓽🍓𝓻𝓲𝓪

Could have been: a simple G-tube exchange.
Turned into: ketoacidosis, adrenal crisis, and a week admission.

When a #RareDisease / #ChronicIllness patient says something (like food) is urgent, believe it! We know our bodies! (Labs proved it. 💁🏽‍♀️)

Bright side: I’m blessed with resilience & I’m being discharged! And the new update of #DisneyDreamlightValley #DDV dropped today! So I’m going home to shower, do #Skincare and have some #Nerd fun/relaxation. Let me know what else I’ve missed this week!

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Fruchtreflex :verified_paw:

#mutualaid (rt pls!)
Dear :mastodon: ,
Hanna needs a spinal column fusion because of #RareDisease #EhlersDanlosSyndrome, which is not covered by health insurance in Germany, which is unfortunately quite backward in the treatment of #RareDiseases. Many small drops sometimes give a wave
and a spine.
#EhlersDanlos
(The appeal for donations is not for me, I'm just passing it on here.)
gofundme.com/f/cgexg-hope-for-

gofundme.comHope for Hanna, organized by Adrienne Biermann PaypalMe-Link: paypal.me/hopeforhanna TikTok: @helpforhanna ****************** (english versio… Adrienne Biermann needs your support for Hope for Hanna
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