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SURVIVORSHIP
GIVING KIDS A VOICE
In the middle of a very busy This half-day meeting This EL-PFDD was an
Childhood Cancer featured a series of incredibly empowering day
Awareness Month facilitated panel and for childhood cancer
(September), we were proud audience discussions survivors and family
to co-host an Externally-Led focused on providing the members, giving them a
Patient Focused Drug FDA with patient long-deserved spotlight to
Development (EL-PFDD) perspectives on a share their very personal
workshop on chemotherapy- survivorship issue with a stories about the severe
induced hearing loss in significant unmet need impact that hearing loss has
pediatrics, along with several and quality-of-life burden. had on their lives and their
partnering organizations. families.
Approximately 200
stakeholders participated,
either in person or via webcast,
and we heard over and over
again about the impactful and
emotional power of this event.
This was hands-down the
most empowering
oncology-related event I
have ever participated in.
My daughter felt heard,
appreciated and validated
in a way that she, as a
survivor struggling with
serious late effects, has not
felt at other events.
A formal workshop report will
be released this spring. Sign up
at childhoodcancerpfdd.org to
be among the first to receive
this report.
