PKD Life - Fall 2020 - 27

PKD Advocacy in 2020:
Community Comes
Together as Congress
Goes Virtual
coronavirus pandemic has quickly changed the way we commuT henicate
with those around us, including policy-makers and regulatory

officials. While we continue to adapt to the "new normal" we find ourselves in, the Foundation is recommitting to ending PKD and advocating
for legislation, regulation, and federal funding opportunities that improve
the lives of people living with PKD.
To that end, we at the Foundation are excited to announce the formation of the PKD Advocacy Champion Network-an exclusive community of patients, family members, clinicians, and researchers dedicated to
fighting for PKD community members.
With guidelines varying from state to state and the necessary-butdifficult social distancing protocols, many of us have been forced to find
new and creative ways to access critical healthcare services or stay safe
while continuing to engage with our community. This is especially true
for those living with a chronic kidney disease like PKD who are at higher
risk for severe illness from COVID-19.
This reality that people with PKD and their families face has made
advocacy more vital than ever. Advocacy efforts have to adjust to the new
modes of communication to ensure policy-makers can fully grasp the
unique needs of the PKD community in this difficult time.
Our new advocacy network will stand on the front lines (6 feet apart,
of course) in the fight to bring visibility to PKD and support the needs of
the patient and research communities. As the 116th Congress comes to a
close, this group stands ready to start the 117th Congress off on the right
foot. Together, we'll be advocating to:
* Expand federal investment
in PKD research and seek the
establishment of the Polycystic Kidney Disease Research
Program under the Congressionally Directed Medical
Research Program
* Support the inclusion of PKDspecific data collection through
the Centers for Disease Control
and Prevention's Chronic Kidney Disease (CKD) Surveillance

Project, including incidence,
prevalence, epidemiology,
and health outcomes to support evidence-based practices
and guidelines for treatment
* Encourage and direct
research initiatives at the
National Institute of Diabetes
and Digestive and Kidney
Diseases (NIDDK) through the
congressional appropriations
report language

It's more important than ever for the community to make our collective voice heard.
Whether you're a seasoned Advocacy Champion or just starting your involvement with
the PKD Foundation, visit our website at
pkdcure.org/advocacy to find plenty of
ways to get involved and make your voice
heard during the COVID-19 pandemic:
* Sign up for Advocacy Alerts to stay
informed on the latest news. Our
Advocacy Alerts provide all the information you need to contact your legislators
and educate them about these important issues.
* Take some time to learn more about
our legislative priorities. Our legislative and regulatory priorities are guided
by our vision to end PKD. Learning more
about these critical issues will help you
be a better advocate.
* Check out our advocacy tools and
resources. Share your story and tell your
friends, family, and elected officials how
they can help fight PKD.

P K D C U R E .O R G

PKD_FA20_26-28_FoundationFocus.indd 27

9/25/20 2:32 PM

http://www.pkdcure.org/advocacy http://www.PKDCURE.ORG

PKD Life - Fall 2020

Table of Contents for the Digital Edition of PKD Life - Fall 2020