Rare Journeys
In the Rare Journeys hub, discover stories from people in the rare disease community.
Explore all of the stories across AADC deficiency (AADCd), Duchenne, Friedreich’s ataxia (FA), Huntington’s disease (HD), phenylketonuria (PKU), or spinal muscular atrophy (SMA), or choose stories from a specific condition using the “sort by” button. Click on the tile to read the story.
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Kailey, who lives in Louisiana with her boyfriend and two dogs, was diagnosed with Friedreich’s ataxia (FA) after years of concerning… - Read More
Amanda, who lives with phenylketonuria (PKU), and her mom, Jill, share what it’s like to manage the condition every day. From navigating… - Read More
April is a California mom and Nana of three who was diagnosed with Huntington’s disease (HD) after learning her father carried the gene… - Read More
Tiffany, a mother of two who lives with Friedreich’s ataxia (FA), opens up about the challenges of navigating life with a physical… - Read More
Tracy, who lives with phenylketonuria (PKU), is a professional astrophysicist and works at NASA. In her opinion, living with PKU requires… - Read More
Sarah Chamberlin, the mother of a child with phenylketonuria (PKU) and a passionate advocate, shares her journey of turning a challenging… - Read More
Simone was diagnosed with aromatic L-amino acid decarboxylase (AADC) deficiency when he was 12 months old. AADC deficiency is a rare… - Read More
For Sam, publishing his first book was nerve-wracking – it chronicled his Friedreich’s ataxia (FA) diagnosis and was therefore very…