Guest Post by Varsha Vijayakumar
Varsha delves into the impact of a diagnostic pathway on patients and their caretakers, and questions the current focus on mental health and assistance offered…
Category: Advocating
Rare but still deserving of care
Guest Post by Jasmine Rutere
Jasmine’s essay unpacks the the barriers and benefits which exist regarding patient participation in rare disease research.
Beyond the cookie cutter
Guest Post by Rachel Lee
Rachel explores the challenges that J has experienced during her rare disease journey through a lens that considers both her intersectional identities as well as those of other rare disease patients.
Rare Cancer Day September 30th
This year I wanted to add my voice to the one of #RareCancerDay. I’ve copied NORD’s questions and my answers here. Want to participate by
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What if I told you that you know someone with Carney Complex?
You‘d probably look at the numbers and say… that‘s impossible. Too rare!
What if I told you you are wrong?
You‘d more than likely shake your head in disbelief. Asking yourself hadn‘t we just done the math? No chance!
‘Student Voice Prize’ Wettbewerb
Gast-Beitrag (EN/DE)
Ich hatte das Vergnügen, mit „J“ zu sprechen, einer Frau mittleren Alters, bei der eine unglaublich seltene Krankheit namens Carney Complex (CC) diagnostiziert wurde.
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Student Voice Prize Competiton
Guest Post (EN/DE)
I had the pleasure to speak to “J” who is a middle-aged female diagnosed with an incredibly rare genetic disorder called Carney Complex (CC).
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