pLGG EL-PFDD Meeting

Submit a Written Comment

The Pediatric Low-Grade Glioma Externally-Led Patient-Focused Drug Development Meeting on February 23, 2024, offered an important opportunity for pediatric low-grade glioma patients, survivors, their families, and caregivers to speak directly to the FDA, pharmaceutical companies, and public about their current and past experiences with pLGG and the impact the disease has had on their daily lives. After the meeting, the Pediatric Brain Tumor Foundation will publish a Voice of the Patient report based on the insights patients, families, and caregivers share.

You can help shape the future of treatments by submitting a written comment in the form below. The comment period will remain open until March 23, 2024. Comments about different topics should be submitted individually.

  • Which pLGG symptoms have the most significant impact on your/your child’s life?
  • How does pLGG affect you/your child on best and on worst days? Describe your best and worst days.
  • What specific activities important to you/your child can you/your child not do at all or as fully as you/your child would like because of pLGG?
  • How have your/your child’s symptoms changed over time? How has your/your child’s ability to cope with the symptoms changed over time?
  • What do you fear the most as you/your child get older? What worries and frustrates you most about your/your child’s condition?
  • What are you currently doing to manage your/your child’s pLGG symptoms?
  • How well do your/your child’s current treatments address the most significant symptoms of your/your child’s pLGG?
  • What are the most significant downsides to your/your child’s current treatments and how do they affect your/your child’s daily life?
  • Short of a complete cure, what specific things would you look for in an ideal treatment for pLGG?


Submit a comment

The comments collected may be shared in the final Voice of the Patient Report and other public-facing materials with identifying information, except first name and first letter of last name, removed)

If you have questions or would like to speak with a member of our team, please email us at [email protected].

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