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A Journey through the Undiagnosed Disease Program: An Interview with Ellen Macnamara, MS, CGC

  • Bradley Power, MS, CGC
  • June 11, 2024

As part of working together on a recent EducateNext webinar, I had the privilege of reconnecting with my colleague and mentor, Ellen Macnamara, ScM, CGC. Mrs. Macnamara is a genetic counselor with the National Institutes of Health Undiagnosed Diseases Program.   Brad: Hi Ellen. We’re excited to host you for a webinar. Can you tell us more about …

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The Power of Progress: Philip's NF1 Clinical Trial Experience

  • Meagan Farmer
  • May 22, 2024

We had the opportunity to connect with Renie and Philip Moss ahead of Neurofibromatosis Awareness Month. Philip has neurofibromatosis type 1 (NF1). It is associated with many features but most often causes growths called neurofibromas (usually benign) as well as characteristic skin and eye findings.1 Malignant or cancerous tumors are rare.1 You …

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