Neurofibromatosis Type 1: A Mother’s Struggle Living with Thousands of Tumors
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Neurofibromatosis Type 1: A Mother’s Struggle Living with Thousands of Tumors

According to a story from StokeonTrentLive, 34-year-old mother Rachel Potter is living with thousands of tumors thanks to a rare genetic disorder called neurofibromatosis type 1 (NF1). Though they aren't…

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“An Event to End NF” Helped Teen Raise Funds, Awareness for Neurofibromatosis
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“An Event to End NF” Helped Teen Raise Funds, Awareness for Neurofibromatosis

On May 17, 2024, Ohio was graced with a unique, Wizard of Oz-themed fundraising event called "An Event to End NF." NF, in this case, stands for neurofibromatosis, a rare genetic…

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In 10 Years, “Links for Lauren” Has Raised $500K for Neurofibromatosis
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In 10 Years, “Links for Lauren” Has Raised $500K for Neurofibromatosis

Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…

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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…

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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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NFX-179 Granted Orphan Drug Status for Cutaneous NF1
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NFX-179 Granted Orphan Drug Status for Cutaneous NF1

According to a recent press release from biopharmaceutical company NFlection Therapeutics, Inc. (“NFlection”), the FDA granted Orphan Drug designation to the company’s drug candidate NFX-179. Altogether, this treatment is designed…

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The Very First Treatment for Neurofibromatosis Type 1 Has Been Approved by the FDA
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The Very First Treatment for Neurofibromatosis Type 1 Has Been Approved by the FDA

Neurofibromatosis  Neurofibromatosis is a rare condition that presents in different forms. Neurofibromatosis type one (NF1) causes tumors to grow on the plexiform neurofibromas, a type of nerve in the body. These tumors…

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ICYMI: First Drug to be Approved for Neurofibromatosis Type 1 and Plexiform Neurofibromas (NF1-PN)
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ICYMI: First Drug to be Approved for Neurofibromatosis Type 1 and Plexiform Neurofibromas (NF1-PN)

  According to a recent announcement by AstraZeneca, the U.S. FDA granted its approval for Koselugo (selumetinib). This is the first drug to be approved for the treatment of children…

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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…

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FDA Approves a Treatment for Neurofibromatosis Type 1 for the First Time Ever
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FDA Approves a Treatment for Neurofibromatosis Type 1 for the First Time Ever

A press release from the US Food and Drug Administration (FDA) recently announced the approval of the drug selumetinib (marketed as Koselugo) for the treatment of patients aged two years…

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Planting Love Around the World: A Young Patient with Neurofibromatosis Works to Reduce COVID-19 Anxiety
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Planting Love Around the World: A Young Patient with Neurofibromatosis Works to Reduce COVID-19 Anxiety

  According to a story from Wexford People, 8-year-old Mia-Lily Ruttle wants to spread some hope to people around the globe. The girl, who has neurofibromatosis, was upset by the impact…

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Even in Death, This Glioblastoma Patient’s Selfless Lego Donation Drive Touches Thousands of Lives
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Even in Death, This Glioblastoma Patient’s Selfless Lego Donation Drive Touches Thousands of Lives

According to a story from 10tv.com, Kellan Shatto is an eight year old boy who really likes to play with Legos. He also has a rare disease: neurofibromatosis. The disease…

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