News

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).

Find out more about the ERA Congress.

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.

Great news for women suffering from polycystic liver disease or PLD! The Dutch Expertise Center of polycystic diseases from the University Medical Center of Groningen (the Netherlands) received a grant worth 800.000E to set up a trial into the effect of anti-estrogenic therapy on PLD in women.

Most patients suffering from autosomal dominant polycystic kidney disease (ADPKD) have at least some liver cysts, but a small number of those suffering from ADPKD has many liver cysts which cause large liver volumes. Liver function is not affected by the disease, but if liver volume grows large, this can result in many somatic complaints and also psychological complaints, due to the enlarged abdominal volume. PLD can also occur as a separate disease – without cystic kidneys – but this is rarer. Approximately 8 in 10 (80%) of those suffering from this severe form of PLD are women, and it is thought that female hormones, like estrogen or progesterone, play an important role in the disease.

On Saturday 16 March 2019, PKD International and the European ADPKD Forum (EAF) hosted the hugely successful 1st European ADPKD Patient Summit – a unique event designed to promote patient-centred care by providing an interactive forum for patients and experts to discuss ADPKD care, research and advocacy.

The ADPKD Summit agenda

View/download the slides of the ADPKD Summit in one PDF file.

Join the SONG-PKD Delphi Panel to help agree the outcomes which should be included in future ADPKD research.

What are outcomes?

Outcomes are the measurable effects that a treatment has on a patient. This can be a drug or other therapeutic intervention. The global SONG initiative is developing a number of core outcomes in kidney disease which all stakeholders doing research agree are critically important to measure and report in all studies and trials.

Using core outcomes means that trial results can be easily compared. They can also be used in guidelines to help patients, families, and their clinicians make informed decisions about treatments.