News

PKD International participated in the Patient Consensus Meeting in Brussels, represented by President Flavia Galletti and board member Uwe Korst. The event was hosted by CompCure, a Danish organization dedicated to research and advocacy in rare kidney diseases, bringing together leading experts, patient organizations, kidney health advocates, and policymakers to define priorities for kidney health.

Distinguished speakers included Prof. Detlef Böckenhauer, representing the International Society of Nephrology (ISN), who delivered a presentation on "Kidney Health and the International and European Public Policy Agenda." The meeting included participation from EKHA, EKPF, FEDERG, and ERKNet.

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.

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.