Meet Rayne Klein: The Klein Family Rare Story

WASHINGTON, Oct. 26, 2026 /PRNewswire/ — The Rare Access Action Project (RAAP) today released its newest patient video, sharing the story of 16-year-old Rayne Klein and her family’s journey navigating an extraordinarily rare genetic condition, years of complex medical care and the challenge of finding a path that would allow Rayne to thrive.

WATCH RAYNE’S STORY: The Klein Family Rare Story

Rayne was born with serious medical complications, she is blind, unable to walk or feed herself, and requires significant medical and personal care. After five years of searching for answers, her family learned that Rayne has a mutation in the RARB gene—retinoic acid receptor beta.

RARB-related disorders are variable genetic conditions that can affect multiple body systems and cause developmental eye defects, birth defects involving the brain or heart, developmental delays, and motor impairments including dystonia or spasticity. There are just over 90 known cases worldwide, most involving children.

But Rayne’s story is about far more than a diagnosis. This is about a family that fought to provide a life for Rayne that today includes her going to school, having friends, and even going to the prom.

Rayne’s patient journey video chronicles the years her parents, Emily and Oren Klein, spent navigating hospitals, specialists, insurance denials and appeals, home nursing challenges and the relentless demands of caring for a child with complex medical needs.

When Rayne was 13, the family made the extraordinarily difficult decision to move her to Matheny Medical and Educational Center. There, Rayne receives round-the-clock medical care, attends classes, participates in activities and spends time with other children. Her family visits nearly every day.

“Matheny has given my daughter a childhood,” Rayne’s Mother, Emily, says in the video.

“Rayne’s story is one of incredible love and perseverance, but it also shows why we must do better for rare disease families,” said Michael Eging, Executive Director of RAAP. “No family should have to navigate an extraordinarily complex healthcare system alone or reach a breaking point before finding the resources and support they need. Behind every healthcare policy, funding decision and barrier to treatment is a family fighting for answers, access and hope.”

More than 7,000 rare diseases affect over 30 million Americans, and only about 5 percent have an FDA-approved treatment. Patients and families with rare diseases deserve better.

The Rare Access Action Project works to ensure their stories are heard, their needs are understood, and no family faces that fight alone.

RAAP, the Rare Access Action Project, is a coalition of patient and life sciences stakeholders that explore creative policy solutions to address structural issues in access and coverage. Our priority is to help ensure rare disease patients have access to the care and treatments they need.

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SOURCE Rare Access Action Project (RAAP)