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Message From AAKP President: Winter 2019

Welcome to 2019!

As we enter the new year, I want to thank AAKP’s professional staff as well as our loyal patients, caregivers, and professional members for all of their support during a very successful 2018. Also, I want to acknowledge the tremendous support received from our allies and industry partners who embraced the concept of patient engagement and have worked with us to infuse AAKP’s culture further into the renal community.

Much of AAKP’s success is built upon the implementation of a National Strategy geared at leveraging our unique position within the renal community. AAKP’s uniqueness is due in large part to its founders: six patients with a vision in 1969 under the leadership of President Samuel Orenstein (see Celebrating 50 Years of Being the Independent Voice of Kidney Patients on page 6 of aakpRENALIFE – Jan/Feb 2019 issue) that included advocating for patients at the Federal, state, and local levels. Read on to see how we will stay true to our original mission in 2019 and beyond.

Transitioning into 2019

In 2019, AAKP celebrates its 50th year of representing the interests of those affected by kidney diseases. Building on our success over the past 50 years, we will continue to grow our patient-centric organization, elevate the patient voice and raise awareness. AAKP regularly engages in innovation-related discussions throughout the kidney continuum, increases disease awareness with our presence on Capitol Hill and participates in discussions that impact patient care and future treatment options. A distinction of AAKP is our independent perspective and principle-based posture – we are proud to serve as your independent voice for a disease that affects you, family members, and over 40 million other Americans.

The analysis of a situation is the starting point of any strategy. In 2014, I was privileged to work with AAKP’s immediate Past President, Paul Conway, as we analyzed the way forward for AAKP. Under his leadership developed the Center for Patient Engagement and Advocacy and the Center for Patient Research and Education. The services AAKP provides are aligned under one of the two Centers. This approach is the foundation of AAKP and clearly defines to industry partners, Federal agencies, allies, other patient groups, and individual patients how AAKP pursues our mission and develops relationships. Moreover, AAKP’s strategy provides a framework that supports growth in capacity, clarifies our focus, and supports patient-centered activities. As AAKP celebrates its 50thAnniversary – the Association will host three major events in our Nation’s Captiol:

May 21 – 23: AAKP, in partnership with George Washington University, will host an International Summit on the GW campus to explore Global Innovations in Patient-Centered Kidney Care.

June 19-20: AAKP will host its Second Annual Policy Summit at the Hall of States building, bringing together key influencers from across all sectors of the policy spectrum (patients, professionals, researchers, industry and Federal government) to highlight innovation in kidney biologics, diagnostics and devices.

September 6-8: AAKP will host its Annual National Patient Meeting at the Hyatt Regency on Capitol Hill. This year’s meeting celebrates AAKP’s 50thAnniversary and will culminate a year of coordinated activities. The agenda will be available in early spring, followed by registration. You may book your hotel room now and keep up with the latest convention information at www.aakp.org/national-patient-meeting.

In addition to the AAKP-led activities discussed here, AAKP will participate in several other patient-related meetings. Paul Conway, Immediate Past President and Chair of Public Policy/Global Affairs will co-chair American Society of Nephrology’s Kidney Health Initiative’s Annual Meeting (May 29-30) and he was selected as the first patient to ever serve on the planning committee for the American Society of Nephrology’s Kidney Week (November 5-10). Throughout 2019, AAKP will also participate in several Hill Days and attend various meetings hosted by the Centers for Disease Control and Prevention (CDC); Food and Drug Administration (FDA); National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)/National Institutes of Health (NIH); Centers for Medicare and Medicaid Services (CMS); Department of Labor (DoL); Health and Human Services (HHS); United Network for Organ Sharing (UNOS); and the White House. AAKP’s involvement includes, but is not limited to:

  • NIDDK’s Kidney Precision Medicine Project (KPMP) and Apolipoprotein L1 gene (APOL1) projects
  • ASN’s Kidney Health Initiative (KHI) and KidneyX project
  • FDA’s Patient Engagement Advisory Committee
  • CDC’s Making Dialysis Safer Coalition
  • Organ Procurement and Transplant Network (OPTN)/UNOS Kidney Transplant Committee
  • CMS’s/ESRD Quality Insights Network 5
  • Health Resources and Services Administration’s (HRSA) Scientific Registry of Transplant
  • Recipients (SRTR) Visiting Committee

In this issue of aakpRENALIFE (click here to view the magazine)

Please take your time and read through this issue to explore the articles prepared for you. Each article has been carefully selected to help kick-off and celebrate AAKP’s 50th Anniversary!

As always, continue to follow AAKP on social media for our latest news and information (Facebook: @kidneypatient; Twitter: @kidneypatients). I look forward to serving you in 2019.

Richard Knight,

President of AAKP

This message was originally printed in aakpRENALIFE – click here to read.