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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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Our Rare Journey

Our two youngest sons (Brynn 25 and Brett 20) were misdiagnosed as having night terrors at around age two. They eventually were both diagnosed with… Continue reading Our Rare Journey

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Mast Cell Madness

I went my entire adult life feeling like something was wrong with me even though I appeared to be in peak performance. I looked great… Continue reading Mast Cell Madness

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Rare Condition, Lifelong Journey

Hi, I’m Ren, & the pituitary gland in my brain is purely there for decoration! While that’s a little humour I like to use, living… Continue reading Rare Condition, Lifelong Journey

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