Neurofibromatosis Type 2

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

  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.…

Continue Reading Rare Community Profiles: A Mother-Son Pair Discuss the Importance of Wellbeing in Managing NF2-Related Schwannomatosis (NF2)
May is Neurofibromatosis Awareness Month: Spreading Rare Disease Awareness
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May is Neurofibromatosis Awareness Month: Spreading Rare Disease Awareness

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…

Continue Reading May is Neurofibromatosis Awareness Month: Spreading Rare Disease Awareness
Study for Vision Loss from NF1 Optic Pathway Glioma Funded By Gilbert Family Foundation

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

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

  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…

Continue Reading RDMD Gets $14 Million in Financing, Partners with UCB to Research Progressive Supranuclear Palsy
Study Confirms Effectiveness of Gamma Knife Surgery for Intracanalicular Vestibular Schwannoma
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Study Confirms Effectiveness of Gamma Knife Surgery for Intracanalicular Vestibular 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…

Continue Reading Study Confirms Effectiveness of Gamma Knife Surgery for Intracanalicular Vestibular Schwannoma
After Neurofibromatosis Type 2 Prevented her From Getting Pregnant, her Twin Offered to Serve as a Surrogate
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After Neurofibromatosis Type 2 Prevented her From Getting Pregnant, her Twin Offered to Serve as a Surrogate

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…

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