With consultant assistance, PKD International conducted strategic planning work including analysis of the organization's actual situation using RACI methodology, identification of benefits of PKDI membership, and drafting of vision statement, mission statement, organizational values, and governance principles.
Read more …PKD International: Building a Strategic Plan from 2025-2029
PKD International's mission is to improve the lives of an estimated 12.5 million people affected by PKD worldwide, including their families and caregivers. The organization accomplishes this by uniting patients, families, scientists, and healthcare professionals committed to ending PKD.
The KDIGO Clinical Practice Guideline for the Evaluation, Management, and Treatment of Autosomal Dominant Polycystic Kidney Disease (ADPKD) represents the first KDIGO guideline on this subject. The guideline was recently made available for public review and will be published in 2024.
The guideline aims to serve as a useful resource for clinicians and patients by providing actionable recommendations with infographics based on a rigorous, formal, systematic literature review. Another aim is to propose research recommendations for areas in which there are gaps in knowledge.
The ADPKD Guideline is co-chaired by Olivier Devuyst, MD, PhD (Switzerland), and Vicente Torres, MD, PhD (United States).
Patient representatives of PKD International/ ERKNET were involved
Chapters of the guideline are:
Chapter 1: Nomenclature, Diagnosis, Prognosis, and Prevalence
Chapter 2: Kidney Manifestations
Chapter 3: CKD Management and Progression, Kidney Failure, and Kidney Replacement Therapy
Chapter 4: Therapies to Delay the Progression of Kidney Disease
Chapter 5: Polycystic Liver Disease
Chapter 6: Intracranial Aneurysms (ICA) and Other Extrarenal Manifestations
Chapter 7: Lifestyle and Psychosocial Aspects
Chapter 8: Pregnancy and Reproductive Issues
Chapter 9: Pediatric Issues
Chapter 10: Approaches to the Management of People with ADPKD
Read more: Autosomal Dominant Polycystic Kidney Disease (ADPKD) – KDIGO
We looked forward to welcoming you at our booth Stand D615.
For the first time after the new board of PKD I was elected, we were delighted to be in person at the ERA Congress. ERA organizes the largest annual Nephrology Congress in Europe, welcoming thousands of attendees from all over the world, focusing on key learning features both in the clinical field as well as the scientific and latest innovations.
At our booth, we also meet representatives from KDIGO, AIRP (PKD Italy) and FEDERG (the European Federation of Patient Groups affected by rare and/or Genetic Kidney Diseases) and a lot of researchers and pharmaceutical companies interested in our work.
Furthermore, we attended several sessions on ADPKD and met Vicente Torres and Olivier Devuyst from the KDIGO guideline team for ADPKD. The guidelines are up to date and are scheduled to be published at the beginning of 2025Find out more about the ERA Congress.
The General Assembly elected a new board following the passing of Tess Harris, the former president. Each attendee introduced themselves and shared their involvement in PKD advocacy and respective roles.
We look forward to welcoming you at our booth Stand G.220, MiCo South - Level 0.
For the first time since COVID, we are delighted to be back in person at the ERA Congress. ERA organizes the largest annual Nephrology Congress in Europe, welcoming thousands of attendees from all over the world, focusing on key learning features both in the clinical field as well as the scientific and latest innovations.
At our booth, you can also meet representatives from PKD Charity UK, AIRP (PKD Italy) and FEDERG (the European Federation of Patient Groups affected by rare and/or Genetic Kidney Diseases).
The first-ever European PKD Patients Day webinar was held on Saturday 18 September 2021. Speakers included some of Europe’s leading experts in ADPKD - Autosomal Dominant Polycystic Kidney Disease.