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Mila & Mettl23

At age 3 Mila had severe regression, loss of speech, tremors, and seizures. Six months later she was diagnosed with level 3 nonverbal autism. Little… Continue reading Mila & Mettl23

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living with an invisible condition

To most people, I seem like any other student—someone who excels in school and has it all figured out. But what they don’t see is… Continue reading living with an invisible condition

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Noé, un heros du quotidien

Noé est un petit garçon extraordinaire. Il est né avec une force intérieure qui illumine ceux qui croisent son chemin. À 15 mois, il a… Continue reading Noé, un heros du quotidien

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TONI – SINDROME GENÉTICO KLHL20

Hola! soy Daiana, mama de Antonio, de 3 años de edad, somos de Buenos Aires, Argentina. Toni fue recientemente diagnosticado con sindrome genetico KLHL20, actualmente… Continue reading TONI – SINDROME GENÉTICO KLHL20

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Living with PBC, Not a death sentence

L. Marie started her career more than 20 years ago helping others access community health programs and healthcare—a skillset she never imagined would eventually be… Continue reading Living with PBC, Not a death sentence

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Coccinelle Claudia-Agnès

Bonjour, je suis Claudia-Agnès j’ai une Neurofibromatose de type 1 et je suis une mutation spontanée. ( et oui je suis la seule dans ma… Continue reading Coccinelle Claudia-Agnès

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Mein Leben nach zwei Corona-Impf-Fails

ich, Jessica (27 Jahre) habe im Sommer 2021 zwei BioNTech-Impfungen in der Praxis meines früheren Hausarztes erhalten. Ich habe mich vor allem wegen einer möglichst… Continue reading Mein Leben nach zwei Corona-Impf-Fails

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Pemfigoid of the pulmonary system & Mucous membrane pemfigoid

Minulla on Keuhkojärjestelmän Pemfigoidi ja Limakalvopemfigoidi. Limakalvopemfigoidi on harvinainen limakalvojen rakkulatauti, autoimmuunisairaus. Sitä sairastaa 0,8-2 ihmistä miljoonasta. Se aiheuttaa nesterakkuloita, haavoja, eroosiota ja arpeutumista mm.… Continue reading Pemfigoid of the pulmonary system & Mucous membrane pemfigoid

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Callie’s PPA2 journey

Callie had a sudden cardiac arrest just after her 1st birthday after contracting a vomit bug. Callie was a healthy baby girl for the first… Continue reading Callie’s PPA2 journey

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