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Cystinosis- ocular nonnephropathic

Home » Cystinosis- ocular nonnephropathic
Rare Classroom: Cystinosis
source: shutterstock

Rare Classroom: Cystinosis

  • Post author:James Moore
  • Post published:May 13, 2022
  • Post category:Cystinosis/Cystinosis- ocular nonnephropathic

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…

Continue Reading Rare Classroom: Cystinosis
Living With Cystinosis: Oscar’s Patient Story, Part Three
source: pixabay.com

Living With Cystinosis: Oscar’s Patient Story, Part Three

  • Post author:Patient Worthy Contributor
  • Post published:May 11, 2022
  • Post category:Cystinosis/Cystinosis- ocular nonnephropathic

This story was originally published in The Cystinosis Advocate, the newsletter for the Cystinosis Research Network, a Patient Worthy partner organization.  Continued From Part Two We were told about what…

Continue Reading Living With Cystinosis: Oscar’s Patient Story, Part Three
Living With Cystinosis: Oscar’s Patient Story, Part Two
source: pixabay.com

Living With Cystinosis: Oscar’s Patient Story, Part Two

  • Post author:Patient Worthy Contributor
  • Post published:May 10, 2022
  • Post category:Cystinosis/Cystinosis- ocular nonnephropathic

This story was originally published in The Cystinosis Advocate, the newsletter for the Cystinosis Research Network, a Patient Worthy partner organization.  Continued From Part One At this stage, the ED…

Continue Reading Living With Cystinosis: Oscar’s Patient Story, Part Two
Living With Cystinosis: Oscar’s Patient Story, Part One
source: pixabay.com

Living With Cystinosis: Oscar’s Patient Story, Part One

  • Post author:Patient Worthy Contributor
  • Post published:May 9, 2022
  • Post category:Cystinosis/Cystinosis- ocular nonnephropathic

This story was originally published in The Cystinosis Advocate, the newsletter for the Cystinosis Research Network, a Patient Worthy partner organization.  Oscar was born in January 2020. He was a…

Continue Reading Living With Cystinosis: Oscar’s Patient Story, Part One
This Brave 4-Year-Old Boy Refuses to Allow Cystinosis to Win
source: pixabay.com

This Brave 4-Year-Old Boy Refuses to Allow Cystinosis to Win

  • Post author:Rose Duesterwald
  • Post published:June 18, 2021
  • Post category:Cystinosis/Cystinosis- ocular nonnephropathic/Rare Disease

  WLNS Brooklyn Michigan is sharing news about Jaxon Meschke, a four-year-old boy with a rare disease called cystinosis. Jaxon’s body has been fighting the disease since he was six…

Continue Reading This Brave 4-Year-Old Boy Refuses to Allow Cystinosis to Win
Answers About Patient Assistance with Rare Medication

Answers About Patient Assistance with Rare Medication

  • Post author:Rebekah Palmer
  • Post published:March 13, 2019
  • Post category:Cystinosis/Cystinosis- ocular nonnephropathic/Nephropathic Cystinosis

A few months ago, Patientworthy editor Kathy Devanny asked me some important questions about the assistance I receive from Patient Access Managers as a person living with the rare disease…

Continue Reading Answers About Patient Assistance with Rare Medication
This Dedicated Scientist Left a Legacy to Fight Cystinosis

This Dedicated Scientist Left a Legacy to Fight Cystinosis

  • Post author:Rose Duesterwald
  • Post published:March 12, 2019
  • Post category:Cystinosis/Cystinosis- ocular nonnephropathic/Nephropathic Cystinosis

According to a recent article in the Sunderland Vibe, the MRC Developmental Pathway Funding Scheme (MRC) was created to carry out the work of Professor Roz Anderson, who recently died of…

Continue Reading This Dedicated Scientist Left a Legacy to Fight Cystinosis

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