Editor's Note: This article was shared with us by our friends at the Cure NF2 Foundation, in honor of May 22nd being World NF2 Awareness Day. To see the article…
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.…
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…
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…
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).…
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…
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…
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…
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…
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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