Mastodawn

Feb 3, 2025

So, finally, I would like you to remember your rare friends and loved ones on Feb 28, which is international Rare Diseases Day, and in the campaigns that follow in March, embrace a different vision for healthcare that is not about 'cost saving', and more about life-saving.

We are all richer when people can live the best life possible, and we don't abandon those with critical illness and disability because it saves a few bucks. It doesn't.

#RareDiseasesDay #RareDisease

Kōtare

Feb 3, 2025

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

https://www.raredisorders.org.nz

Amplifying the collective voice of New Zealanders with rare disorders

RDNZ 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.

Rare Disorders New Zealand

Visions of Napa Feb 3, 2025

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

https://www.rarediseaseday.org/what-is-a-rare-disease/

🦇 Singing Zombie 🦇Feb 29, 2024

I don't feel like elaborating anything on #EDS today, I don't feel like explaining for the thousand millionth time what it is, but it will happen. Preferably not today, but it's #RareDiseasesDay here every day, so it's not going to fail to happen. But I don't want to be in the mood to start a big research today either, and it's going to be big, because you have to find actual articles (in ger?!?) about it first, which don't just take place in entertainment magazines.

Stehaufmama 🤍Feb 29, 2024

Happy #RareDiseasesDay to all #Spoonies! Einen schönen #TagDerSeltenenErkrankungen!

Obwohl Seltene Erkrankungen – wie der Name verrät – selten sind, leben allein in Deutschland rund 4 Millionen Betroffene, also 5% der hier lebenden Menschen. Ungefähr 80% der Seltenen Erkrankungen sind genetisch bedingt und viele der Symptome machen sich schon im Kindesalter bemerkbar.
Bei mir sind 33 Jahre ins Land gezogen, bis eine Mutation des #PTen Gens diagnostiziert wurde - natürlich ist man erstmal 1/×