Compassionate Use Navigator - new resource


(Elena Gerasimov) #1

Dear friends,

We would like to inform you about the Compassionate Use Navigator, a new service created by Kids v Cancer for kids and their families who are looking to access an experimental drug through compassionate use. The Compassionate Use Navigator offers personal assistance with completing the application, locates pharmaceutical companies’ contact information, provides guidance on every step, and collects the outcomes of applications.

If you know a family that can benefit from this new service, please let them know about it, and please help spread the word.

If you have applied for compassionate use in the past, we ask you to please share your story for our database. We know how many requests FDA has authorized, but we do not know how many requests have never reached FDA because they were denied by drug companies. No one collects this data today, and we aim to fill this gap. Let us know which companies you requested compassionate from, the point of contact at the company, and whether your request was ultimately granted. And, please let us know how your child did – was there any possible benefit from the drug?

Please visit the Navigator’s website, http://www.kidsvcancer.org/compassionate-use/or contact me at elena@kidsvcancer.org.

Elena Gerasimov, Compassionate Use Navigator Program Director.


(Kyle Matthews) #2

Thanks for sharing Elena! I’m excited you’ve all got this put together and launched now. It’s needed!