Jo and Oscar. Photo courtesy of Jo Ward

Rare Community Profiles: A Mother-Son Pair Discuss the Importance of Wellbeing in Managing NF2-Related Schwannomatosis (NF2)

• Post author:Jessica Lynn
• Post published:April 4, 2024
• Post category:Neurofibromatosis Type 2

  Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…

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Rare Classroom: Neurofibromatosis Type 2

• Post author:James Moore
• Post published:May 19, 2023
• Post category:Neurofibromatosis/Neurofibromatosis Type 2

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…

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AllStripes: How this HealthTech Company Leverages Science to Advance Rare Disease Research (Pt. 1)

• Post author:Jessica Lynn
• Post published:December 13, 2021
• Post category:Rare Disease

For as long as she can remember, Nancy Yu has been entranced by the intersection of science and technology. In fact, as she describes it, she imagines a world in…

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Family Support: Twin Sister Carries Twins for Neurofibromatosis Type 2 Patient

• Post author:James Moore
• Post published:June 28, 2019
• Post category:Neurofibromatosis/Neurofibromatosis Type 2

According to a story from The Columbian, twins Jill Noe and Whitney Bliesner had developed a deep bond during their childhood days growing up in Oregon. However, they did not…

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After Neurofibromatosis Type 2 Prevented her From Getting Pregnant, her Twin Offered to Serve as a Surrogate

• Post author:James Moore
• Post published:May 8, 2019
• Post category:Neurofibromatosis/Neurofibromatosis Type 2

According to a story from KTVZ, Jill Noe and Whitney Bliesner have always shared a special bond. They are twins, now 34 years old. Despite their closeness, they do share…

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Brainstem Implant Can Preserve Hearing in Neurofibromatosis Type 2 Patients

• Post author:James Moore
• Post published:May 4, 2018
• Post category:Neurofibromatosis Type 2/Rare Disease

According to a story from Newswise, neurosurgeons at UC San Diego Health can now provide patients with an auditory brainstem implant (ABI) that can preserve some degree of hearing in…

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