The First Fire Dragon

Hi, I’m Daniel. I’m a ten year old boy, I’m a lover of science and reading and I’m a rare disease advocate and book author!… Continue reading The First Fire Dragon

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Kians Story 💫

I am fundraising for the remarkable Royal Berkshire Hospital accident and emergency department. I am holding this fundraiser as a token of appreciation to show… Continue reading Kians Story 💫

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Rare Disease Virtual International Live-case Presentation

I’m retired U.S. Navy, Operation Desert Storm; Enduring and Iraqi Freedom veteran and 10 year rare disease live-case presentation. Diagnosed w/hereditary colon cancer syndrome, attenuated… Continue reading Rare Disease Virtual International Live-case Presentation

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Una estrella llamada jazmín

Jazmín fue una nena activa vital disfrutaba todo lo que hacía era feliz.el 6 de junio del 2022 falleció de una enfermedad Mitocondrial síndrome de… Continue reading Una estrella llamada jazmín

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‏كفاح وأمل

بدأت حكايتي عندما وُلِدتُ في عام 2003 م. أنجبتني والدتي وكنت حينها الفرحة المنتظرة لعائلتي الصغيرة المكونة من أمي, وأبي, وأخوين أحدهما يكبرني بِأربع سنوات… Continue reading ‏كفاح وأمل

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My history

Here is my story, 1999 at the age of 55 I first noticed weakness in my legs. I had to push myself up from a… Continue reading My history

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The Battle of the Rare

The Battle of the Rare One word to describe people living with rare diseases or illnesses is “dismissed”. “We are at war with an invisible… Continue reading The Battle of the Rare

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No brag just fact

In mid April 2017 an MRI found a non cancerous tumor in my left brain . I came home 15 weeks later. On May 1… Continue reading No brag just fact

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A public health warning and a life beating the odds

My story began one dark winter’s night in the 1980’s, when I was born prematurely at a hospital in the UK with an infection that… Continue reading A public health warning and a life beating the odds

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