Personal story by Katie from Canada

Katie is a patient and one of our Patient Advocates for Canada. She is a true example how you could deal with your disease. Watch… Continue reading Personal story by Katie from Canada

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My newborn

Hello my name is Ray, me and my girlfriend just welcomed our baby girl on October 23 2022. She was born premature and Everything was… Continue reading My newborn

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Lijep pozdrav. Moje ime je Senaida, a moj sin se zove Dželal, koji boluje od rijetkog oboljenja, cistične fibroze. Živimo u Srebreniku mali gradić u… Continue reading Nevidljiva

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I have Huntington disease

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My son was born about two week early. They at first thought he had downs. I said no he doesn’t look it. They assumed because… Continue reading Kbg

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CASK-related disorders : (January 2023)

Notre fille, Enora, est née avec 3 semaines d’avance suite à un déclenchement en raison d’une inflexion de croissance pendant les dernières semaines de grossesse.… Continue reading CASK-related disorders : (January 2023)

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Emilka choruje na ultra rzadką chorobę metaboliczną Wrodzone Zaburzenie Glikolizacji Białek PIGN.

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Why I became an advocate

Me and my husband Giovanni live in Turin, Italy, with our nine years old son Pedro. After a long diagnostic journey at the age of… Continue reading Why I became an advocate

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Being Your Own Powerhouse

You might have seen the meme, or remember from science class, that “the mitochondria is the powerhouse of the cell!” It converts food into energy,… Continue reading Being Your Own Powerhouse

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