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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May is Neurofibromatosis Awareness Month: Spreading Rare Disease Awareness

• Post author:James Moore
• Post published:May 26, 2022
• Post category:Neurofibromatosis/Neurofibromatosis Type 1/Neurofibromatosis Type 2

According to a story from the Children's Tumor Foundation (CTF), the month of May is recognized as Neurofibromatosis (NF) Awareness Month. This is a time for spreading awareness about neurofibromatosis…

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Study for Vision Loss from NF1 Optic Pathway Glioma Funded By Gilbert Family Foundation

• Post author:Alyssa Stevens
• Post published:December 1, 2021
• Post category:Neurofibromatosis/Neurofibromatosis Type 1/Neurofibromatosis Type 2

According to a recent article, the nonprofit Gilbert Family Foundation has offered to fund the $5.4 million clinical study to better understand vision loss from NF1-associated optic pathway gliomas (NF1-OPGs).…

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RDMD Gets $14 Million in Financing, Partners with UCB to Research Progressive Supranuclear Palsy

• Post author:Jessica Lynn
• Post published:April 30, 2020
• Post category:Neurofibromatosis/Neurofibromatosis Type 2/Progressive Supranuclear Palsy/Rare Disease/Sanfilippo Syndrome

  According to BioSpace, healthcare technology company RDMD has raised $14 million in Series A financing, and developed a partnership with UCB. In addition to growing their platform to discuss…

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Study Confirms Effectiveness of Gamma Knife Surgery for Intracanalicular Vestibular Schwannoma

• Post author:James Moore
• Post published:April 8, 2020
• Post category:Neurofibromatosis Type 2/Schwannoma

According to a study published in January in the scientific journal Acta Neurologica Scandinavica, the use of gamma knife surgery as a treatment for a rare tumor called a vestibular schwannoma can…

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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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