These people are living with a rare disease and educating the wider public.
My name is Katie and I was diagnosed with CMTC when I was 5 months old. I am now 30 years old and have lived… Continue reading Katie’s Story
Read full storyMi chiamo Annarita ho 27 anni e sono residente a Pagani, un paese in provincia di Salerno. Il destino ha voluto che proprio il giorno… Continue reading Annarita e la sua passione per la danza oltre la disabilità
Read full storyChapman, an extraordinary 12-year-old blind pianist, has embarked on an incredible journey since his birth. Born in Hong Kong and currently residing in London, Chapman… Continue reading Melodies of Resilience: Chapman’s Undiagnosis Disease and Musical Triumph
Read full storyAt three and a half months old, my first fracture appeared. Within a year, I had fractured three more bones. The doctor after having a… Continue reading Brittle but not broken
Read full storyJosiah is 23 months old and been having symptoms since birth! Starting with 3 infections at 10 days old, which lead to a spinal tap… Continue reading Josiah’s Journey through FCAS
Read full storyIn 2018 I was diagnosed with CIRS: Chronic inflammatory response syndrome, Adrenal Insufficiency, and was also believed to be Mast Cell Disease. I had a… Continue reading My Mast Cell Disease Story
Read full storyOur little Leo was born at 37 weeks after an emergency scan He was released from the hospital two days after birth with no health… Continue reading Leo’s story
Read full storyOakley was diagnosed with Nicolaides-Baraitser Syndrome in October 2019. When I was pregnant with Oakley, we knew we wanted to choose a good, strong name… Continue reading Oakley’s Journey
Read full storyMy name is Amber and I live in Queensland. I was born with Netherton Syndrome which is a form of Ichthyosis. Ichthyosis is an extremely… Continue reading A little insight to my daily life!
Read full storyHola soy Ana Victoria una niña de 8 años que a vivido en un mundo de personas con 5 dedos en cada mano, siempre busco… Continue reading Vivir en un mundo de 5 dedos
Read full storyLijep 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
Read full storyJe m’appelle Julien, j’ai 34 ans et je suis atteint d’une Myopathie de Duchenne. Il s’agit d’une maladie génétique rare qui provoque une dégénérescence musculaire… Continue reading Je transcende mon handicap
Read full storyЗдравейте казвам се Камелия, медицинска сестра съм от България.Синът ми се казва Максим и страда от рядко генетично заболяване Синдром на Гителман.Още от много малък… Continue reading Синдром на Гителман
Read full storySofia is 1 year and 9 months old. She has congenital defect. Her left leg is shorter than right leg by 9,5 cm. And until… Continue reading Short leg but hopeful eyes
Read full storyMarc, our son, is a wonderful 11-year-old enjoying life in the green, residential town of Sant Cugat (Barcelona, Spain). Not only does he fill our… Continue reading MARC, A HAPPY FACE DESPITE HIS RPS6KA3 GENE MUTATION
Read full storyДоброго дня . Чудова , життєрадісна Ліза , із міста Марії, із Маріуполя . Нам пощастило вибратися із окупації , та втекти від війни .… Continue reading Ліза із Маріуполя .
Read full storySono Valentina, ho 23 anni, appena arrivata in Italia a 7 anni mi hanno diagnosticato a Udine hypoglycemia una malattia rara che pochissimi conoscono. La… Continue reading Sentirsi diversi senza esserlo
Read full storyI was 27 weeks pregnant when my MFM confirmed our son would be born with congenital diaphragmatic hernia. He had right sided CDH, with liver… Continue reading Living with CDH
Read full storyHi, my name is Jayme and I am 26 years old. When I was born in 1996, my Mom along with Doctors knew there was… Continue reading Not Too Rare To Care
Read full storyHello 👋 My name is Omaima but you can call me om , I’m from Kuwait city 🥰🇰🇼 Have arteriovenous malformation (avm ) left leg… Continue reading My Story My Journey (قصتي رحلتي)
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