Archive for March, 2019

EKHA Monthly Newsletter

March 2019

EKHA Activities

EKHA celebrates World Kidney Day 2019

In its 14th year, World Kidney Day 2019: Kidney Health for Everyone Everywhere, focused on the disparities and inequities that exist in kidney health.

Read More here

EKHA takes part in the 1st European ADPKD Summit

On 16 March, EKHA joined over 50 participants for the first European ADPKD Patient Summit Co-hosted by PKD International and the European ADPKD Forum (EAF), the occasion brought together patients, carers, providers, foundations, researchers and industry to discuss advancements in ADPKD. 

Read More here

Thematic Network Update

Outreach to partner organisations and EKHA members is underway. If you have not had a chance to sign up to our Network on Organ Donation and Transplantation, please register here. Should you have any questions, please e-mail

EDITH Nephrologist Survey

Take part in the EDITH Nephrologist survey!

This survey is part of the European EDITH project and aims to learn from nephrologists experience in providing dialysis, kidney transplantation and comprehensive conservative management, including potential barriers and facilitators for these treatments. 

Should you have any questions, please e-mail Rianne de Jong via


EP Think Tank releases report on “The benefit of EU action in health policy: The record to date”

The study concludes that EU health policy measures taken to date are highly beneficial to and relevant for European citizens, economies and the Member States.

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EU budget for 2021-2027: Commission welcomes provisional agreement on Horizon Europe, the future EU research and innovation programme

The preliminary political agreement reached by the European Parliament, Council and Commission on Horizon Europe, is now subject to formal approval by the European Parliament and Council. The Commission will now start preparing Horizon Europe’s implementation in order to have the first draft work programmes published in time for the programme’s launch on 1 January 2021.

Read More here

 CHRODIS PLUS releases report on “Health Promotion and Primary Prevention in 21 European Countries”

This report provides a comparative overview of key policies, approaches, examples of Good Practice, gaps and needs.

Read More here

Upcoming Activities

Activity/Event Date
World Health Day 7 April, 2019
EUDONORGAN Social Awareness Event 5 Lisbon (Portugal) 9 April, 2019
Time to deliver – meeting NCD targets to achieve Sustainable Development Goals in Europe 9-10 April, 2019
EUDONORGAN Social Awareness Event 6 Athens (Greece) 15 April, 2019
Horizon 2020 call: Regenerative medicine: from new insights to new applications Submission deadline: 16 April 2019
Horizon 2020 call: Innovation Procurement: Next generation sequencing (NGS) for routine diagnosis Submission deadline:16 April 2019
Horizon 2020 call: Large Scale pilots of personalised & outcome based integrated care Submission deadline:24 April 2019
Horizon 2020 call: Scaling up the univocal Identification of Medicinal Products Submission deadline:24 April 2019
IMI Call: Optimising future obesity treatment Submission deadline:25 April 2019
Thematic Network: Webinar 1 8 May 2019
The CHRODIS Conference Budapest (Hungary) 14-15 May, 2019
IMI Call: Blockchain Enabled Healthcare Submission deadline:15 May 2019
IMI Call: Integrated research platforms enabling patient-centric drug development Submission deadline:15 May 2019
European Elections 23-26 May, 2019
World Health Assembly 20–28 May, 2019
ERA-EDTA National Societies Meeting 12 June, 2019
56th ERA-EDTA Congress Budapest (Hungary) 13-16 June, 2019
EKHA Associate Members Meeting 25 June, 2019
EKHA Management Committee Meeting 25-26 June, 2019
European Kidney Forum 25 June, 2019
Thematic Network: Webinar 2 9-11 September 2019 (TBC)
Thematic Network: Submission of final version of Joint Statement Early September (TBC)
48th EDTNA/ERCA International Conference Prague, Czech Republic 14-17 September, 2019
Thematic Network: Endorsement period of Joint Statement September – November
Thematic Network: Presentation of the Joint Statements at the Eu Health Policy Platform Meeting October (TBC)
European Day for Organ Donation and Transplantation (EODD) London (UK) 12 October, 2019
Dutch Kidney Foundation Red Carpet 23 November, 2019
Thematic Network: Closure of the 2019 Thematic Network Cycle, transformation into stakeholder network and lessons learned webinar with SANTE Units and the HPP team. December (TBC)

Rare But Not Alone, Moving Forward Together

On 16 March, EKHA joined over +50 participants focused on Autosomal dominant polycystic kidney disease (ADPKD), at the 1ST European ADPKD Patient Summit. Co-hosted by PKD International and the European ADPKD Forum (EAF), the occasion brought together patients, carers, providers, foundations, researchers and industry.  

EKHA member, Tom Oostrom, Dutch Kidney Foundation and EKHA Chairman Ray Vanholder

Founded on the EAF/PKD International ADPKD Patient Route Map and the EAF Multidisciplinary Position Statement on ADPKD Care, the event was co-designed and co-delivered by patients and experts from across Europe, providing an interactive forum for patients and experts to discuss and collaborate on ADPKD care, research and advocacy.

EKHA member, Tom Oostrom, was invited to present on artificial kidney development, and Chairman Ray Vanholder discussed advocacy on prevention in rare diseases like ADPKD and the potential avenues for personalised medicines in CKD.

Additionally, the programme featured intimate Breakout Sessions, which covered topics spanning the care pathway for ADPKD, including self-care and risk reduction, predicting the progress of ADPKD and genetics, liver cysts and pain, dialysis and transplantation; as well as Plenary Sessions, highlighting current research and industry perspectives.

See our post and others on twitter:

World Kidney Day 2019

In its 14th year, World Kidney Day 2019: Kidney Health for Everyone Everywhere, focuses on the disparities and inequities that exist in kidney health.

This year’s global campaign aims to highlight the burden of kidney diseases and the need for advances in prevention and management. Kidney Health for Everyone Everywhere calls for universal health coverage (UHC) for prevention and early treatment of kidney disease.

In alignment with the UN SDGs, the work of WHO Europe and other partners working to advance UHC policy at EU level, EKHA supports this call.

Primary prevention measures and early detection are of critical importance in managing the progression of Chronic Kidney Disease (CKD). As with other comorbid chronic conditions, many risk factors and barriers to access are linked to social and environmental determinants like poverty, gender, education, employment, geography, pollution etc., which further disadvantages society’s most vulnerable. In Europe when care is sought, inequalities persist for patients in the availability of Renal Replacement Therapies (RRT). And while transplantation is widely acknowledged as the most cost-effective treatment for CKD, patients in some member states have a higher chance of being a donor recipient, owing to national efficacy in the coordination of available organs for transplantation.

EKHA is committed to advancing EU policies that support, healthy lifestyles, screening and early diagnosis of high risk individuals, equitable access to cost effective treatment that can prevent or delay disease progression, regardless of geography. Our work this year is especially focused on advancing the issue of Organ Donation and Transplantation in the EU, through DG SANTE’s EU Health Policy Platform Thematic Network cycle.

We hope you will join us in supporting the call for Kidney Health for Everyone Everywhere by advocating for concrete measures at EU level that improve kidney care.

For more information on World Kidney Day 2019, visit:

Or join the Twitter discussion online: @EKHA_EU #WorldKidneyDay