Tag: ultra-rare

A total of 9 posts are filed under ultra-rare
RARECast: A Quest for Tribe: Searching for Others with the Same Ultra-Rare Mutation
When Milo Lorentzen was born, concerns over his condition sent him to a neonatal intensive care unit where he spent the first ten days of… Continue Reading
Rare Revolution: My ULTRA-RARE Story
Richard Gelati has lived with an ultra-rare condition for nearly forty years. His story demonstrates that with perseverance, a strong family… Continue Reading
Jasey’s Journey: Ultra-Rare PACS1 Genetic Disease
One can only imagine the joy and excitement that comes with the arrival of a new baby. We were no different from anyone else; we were… Continue Reading
Natali’s Journey with Pfeiffer Syndrome and Jackson-Weiss Syndrome
Pfeiffer Syndrome Type II and Jackson-Weiss Syndrome: Pfeiffer Syndrome is a rare craniofacial syndrome that is said to affect one in… Continue Reading
Creation of Hayden’s Heroes Inspired by 6-Year-Old Hemophagocytic Lymphohistiocytosis Patient
Every parent knows how heartbreaking it is when your child is sick, but it’s even worse when you don’t know whats wrong. In many ways,… Continue Reading
Alaskan Boy is Considered to be the Only Patient in State with Menkes
November is Menkes Awareness Month in Alaska. However, even though the disease affects thousands of children across the country each year,… Continue Reading
An Otherwise Typical Teen, With a Diagnosis of Dubowitz Syndrome, She’s 1 in 50 million
Niamh Stirling is like any 15-year-old Irish girl, bubbly and enthusiastic, petite and pretty as a picture, large dark eyes and generous… Continue Reading

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