Watch and Participate

Live Stream: pLGG EL-PFDD Meeting

Meeting Agenda

View the pLGG EL-PFDD meeting agenda at curethekids.org/elpfdd-agenda (link opens in new tab)

Live Polling

Respond to polling questions in real time!
Go to PollEv.com/pLGG and make your voice count!

Phone-in Live

Want to talk to us live during the discussion sessions? Please call +1 703-844-3231 when prompted. Due to time restrictions, we may not be able to get to all phone calls.

Submit a Written Comment

If you are a pediatric low-grade glioma patient, survivor, parent, family member, or caregiver, please use the form below to submit a comment about the following EL-PFDD meeting topics:

  • 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?

The comment period will remain open until March 23, 2024. Comments about different topics should be submitted individually.

 

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