PKD Life - Fall 2022 - 27

USING YOUR VOICE:
ADVOCATING FOR CHANGE
ON VIRTUAL ADVOCACY DAY
O n April 27, the PKD Foundation convened
Learn More
As we count down to the next PKD Connect
Conference, there are numerous ways to find
more education and resources through the
PKD Foundation.
Sign up for our educational emails.
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and host events such as webinars, signing
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helps us share important resources with you.
Check out our resource library.
Whether it's information on transplantation,
diet, or total kidney volume,
resources.pkdcure.org has guidance for you.
Searchable by topic, this is a great place to
start for any PKD-related question.
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we share articles on topics important
to the PKD community, including spotlights
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Subscribe to the blog at pkdcure.org/blog to
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PKD patients, caregivers, families, and supporters
for the 2022 Virtual Advocacy Day. This
free event required zero previous experience-
just a passion for advocacy. Together, participants
met with federal lawmakers across the country to
advocate for the PKD community's needs.
During Virtual Advocacy Day, participants
urged Congress to support:
* Continued funding for PKD and kidney disease
research at the National Institutes of Health, the
Centers for Disease Control and Prevention, and
the Department of Defense
* The passage of the federal Living Donor Protection
Act (H.R. 1255/S. 377), removing disincentives
for living donors
* Addressing the racial disparities in kidney disease
diagnosis, treatment, and access to transplantation,
particularly for PKD
Change starts through action and conversation.
Each participant on Virtual Advocacy Day brought
vital awareness and education about PKD to Capitol
Hill. Here's a recap of the day by the numbers:
* Nearly 100 PKD advocates registered to attend.
* More than 110 meetings took place with Congressional
offices, including eight with members
of Congress.
* Nine Advocacy Champions recorded videos to
explain the importance of advocacy on the Foundation's
social media channels.
Jon Rich, the Foundation's
chief philanthropy officer,
also provided updates on
our most recent projects and
what's on the horizon.
Access to the education
needed to manage one's PKD
journey is essential to our
mission of giving hope. For
those who were unable to
attend PKDCON 2022, recordings
of each session are being
produced by our team and
will soon be included in our
digital resource library.
*
PKDCURE.ORG
27
* Four additional members of Congress agreed to
join as co-sponsors of the Living Donor Protection
Act.
Whether you are a seasoned advocate or just
beginning your journey with us, our website
pkdcure.org/advocacy has plenty of opportunities
for you to get involved. Signing up for Advocacy
Alerts to stay informed on the latest news is
a great way to start. These alerts provide all the
information you need to contact your legislators
and educate them about these important issues.
*
http://resources.pkdcure.org http://www.pkdcure.org/blog http://www.pkdcure.org/advocacy http://www.PKDCURE.ORG
PKD Life - Fall 2022

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