EKHA

EKHA is an alliance of four societies created in 2007 to focus the attention of the political community and, through the media, of people at large, on the burden of Chronic Kidney Disease (CKD) considering patients’ morbidity/mortality as well as the socio-economic impact of dialysis and transplantation in Europe: besides the ERA, the European Kidney Patients’ Federation (EKPF, former CEAPIR), the European Dialysis and Transplant Nurses’ Association/European Renal Care Association (EDTNA/ERCA) and Dutch Kidney Foundation (DKF) are EKHA management committee members.

The EKHA management committee, which includes two representatives of ERA nominated by the Council, works closely with the people involved in the European health organization to increase the awareness on CKD throughout Europe.

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Tackling Chronic Kidney Disease at European level

January 19, 2022 – Today EKHA is launching a set of recommendations to tackle Chronic Kidney Disease (CKD) at EU level together with its partners: the French nephrology and patient societies: Société Francophone de Néphrologie, Dialyse et Transplantation (SFNDT), France Rein, and Renaloo.

The Ministerial Conference on the Resilience of Health Systems to Support Cooperation on a European Scale, which was organised yesterday by the French Presidency of the Council of the European Union, echoed the need for cooperation at EU level to build strong and resilient health systems across the Union, and to improve the health of all European citizens. Building on this meeting, the document brings to the fore key measures to alleviate the heavy burden caused by CKD on both patients and European Healthcare systems through 4 main strands:

  1. Prevent CKD or at least delay its progression
  2. Improve access to existing treatment options and stimulate research to develop more innovative treatments
  3. Recognise the high vulnerability of patients and their needs in times of pandemic
  4. Promote green dialysis

In addition to these recommendations, the document calls on EU policy makers to include CKD in the new EU initiative on NCDs ‘Healthier Together’. Tackling the very specific nature of the disease will be essential to reduce the CKD burden, improve the quality of life of patients and ultimately contribute to strengthening EU health systems.

Read the recommendations in full here.

The Webcast of the European Kidney Forum 2021 ‘Unmet needs and challenges in access to treatments in Europe: the case of Chronic Kidney Disease’ is available.

This year’s Forum is organised as part of the Decade of the Kidney™ campaign, an EKHA-led initiative that aims to put the spotlight on Kidney Disease at EU level for the next ten years. The event will focus on addressing the challenges of access to all types of kidney disease treatments in Europe, including home-dialysis, transplantation and primary & secondary prevention. In addition, the event will explore how to mitigate the negative impact of COVID-19 on access to kidney care and promote information and education about different treatment options to health professionals, patients and general public.

Speakers include:
• Stella Kyriakides, European Commissioner for Health and Food Safety, DG SANTE
• Hilde Vautmans, Chair of the MEP group for Kidney Health
• Manuel Pizarro, Vice-Chair of the MEP group for Kidney Health
• Stefan Schreck, Advisory for stakeholder relations, DG SANTE
• Lieven Annemans, Senior Professor of Health Economics, Ghent University
• Jan De Maeseneer, Professor in Family Medicine and Primary Care, Ghent University
• Raymond Vanholder, EKHA President
• Daniel Gallego, President of the European Kidney Patients’ Federation
• Jeanette Finderup, Clinical nurse specialist, European Dialysis and Transplant Nurses Association/European Renal Care Association
• Henning Søndergaard, Patient Advocate, Danish Kidney Association

Watch the webcast here.

A new article has been published by Raymond Vanholder, President of the European Kidney Health Alliance (EKHA), on CKJ
Fighting the unbearable lightness of neglecting kidney health: the Decade of the Kidney™
The latest publication of EKHA provides an in-depth overview of the elements that constitute the current challenges in kidney disease. The publication, which can be used for advocacy purposes, emphasizes the urgent need to reduce the rapidly growing burden of kidney disease worldwide.

Read more here

As a Founding Member EKHA, we aim to foster innovation in kidney disease treatments through the Decade Of The Kidney™ campaign on World Kidney Day.
In the last 50 years, patients saw little change in dialysis options despite new technologies in other aspects of society. Together with EKHA, for World Kidney Day we’ll push for innovations in treatments through the Decade Of The Kidney

Read more here

U.S. and EU Kidney Groups Align for Global Innovation ConsortiumWorld Kidney Day Announcement Precedes Virtual Patient-Led Global Summit
The American Association of Kidney Patients (AAKP), the largest U.S. kidney patient organization, today joined the European Kidney Patients’ Federation (EKPF) and the European Kidney Health Alliance (EKHA) in a new collaboration designed to expand the role of kidney patient consumers as central influencers in policy deliberations related to kidney research investments, more inclusive clinical trials, accelerated innovations, and improved health outcomes

Read more here

EKHA Call to Action to tackle Chronic Kidney Diseases (CKD) at the European level

EKHA has published a Call to Action on Improving Prevention, Treatment and Care of Chronic Kidney Disease, which ERA-EDTA fully endorses.

Read it here

 

EKPF and EKHA will have a meeting with EU Commissioner Stella Kyriakides on the 26th of February.

It will be a first introduction meeting in which we intend to explore the possibilities for DG Santé  to enable an EU working group that will collaborate to design an EU CKD plan – where possible in parallel with the Beating Cancer Plan – to reduce the burden of CKD for patients. This is one of the ambitions of the ‘Decade of the Kidney program’ and hopefully will be the first step to achieving our goals.

 

ECDA responded to the beating cancer plan that was launched 3 February

whit referral to the prevention part of the plan and it’s possibilities for other chronic diseases besides Cancer. Accessible here 

 

ECDA’s feedback on the European Commission consultation on the ECDC reinforced mandate: Accessible here

One of the first steps in building a stronger health Union is to have a stronger European Centre for Disease Prevention and Control (ECDC). If Europe is to focus on greater strategic autonomy and be a geopolitical force it needs a world class Centre for preventing and controlling diseases. With a mandate extended to chronic diseases, ECDA states that the ECDC could take a far more active role in public health.

 

A series of new EKHA publications are available online:

  • COVID-19 and policy changes for kidney disease: the need for a ‘decade of the kidney’ – Accessible here
  • Supplemented ERA Registry data evaluated the frequency of dialysis, kidney transplantation and comprehensive conservative management for patients with kidney failure in Europe – Accessible here
  • Mass Disasters and Burnout in Nephrology Personnel, From Earthquakes and Hurricanes to COVID-19 Pandemic – Accessible here
  • A roadmap for optimizing CKD patient care and patient-oriented research in the Eastern European nephrology community – Accessible here

 

EKHA published its open letter “Life After COVID-19: Time to Realise a Second EU Action Plan On Organ Donation and Transplantation” Accessible here

EKHA did this – on 13 January 2021 – in light of the devastating impact of the COVID-19 pandemic. Addressed to EU policymakers, the open letter has been endorsed by 91 stakeholders, including:

  • 20 Members of the European Parliament supporting the MEP for Kidney Health
  • 12 National Competent Authorities for Organs
  • 59 stakeholder organisations

EKHA President calls on EU policymakers to pay more attention to kidney failure

In a letter to the Flemish daily newspaper ‘De Standaard’ published in Belgium, EKHA President Prof Raymond Vanholder calls attention to the burden of kidney disease in Europe and explains why EU policymakers should do more to support scientific research in the field of renal failure.

You can read a summary of the letter on the EKHA website here.

New editorial article by Prof. Raymond Vanholder, EKHA President

Prof. Raymond Vanholder has been invited by the editorial team of the Friends of Europe Think Thank, in his capacity as ECDA and EKHA President, to write an article on ‘How do healthcare systems manage chronic diseases during COVID-19 and beyond’ using CKD as an illustrative example.
Read the article here

EKHA holds a successful webinar on COVID-19 and kidney care

The EKHA webinar ‘Towards a resilient and patient centered approach to kidney care in Europe: learning from the COVID-19 pandemic and harnessing future preparedness’, took place on 27th October 2020 and gathered over 65 participants from across 18 different countries. The recommendations highlighted by patients, health professionals, researchers and EU officials during the webinar will be compiled in a call to action to EU policy makers. You will find the recording of the meeting below.

EKHA offers its support to Eurostat

On early November 2020, EKHA contacted the statistical office of the European Union Eurostat to outline a substantial underestimation in their statistics of the mortality due to CKD in the EU, following the publication of their data. Eurostat data indicate that 37,849 people die from CKD each year in the EU whilst the 2020 Global Burden of Disease study shows that this number equals 92,444. EKHA offered its support to correct the figures and collect accurate data in the future.

ECDA asks to extend the mandate of the European Center Disease Control (ECDC) to NCDs

ECDA published a position statement asking to extend the ECDC mandate and capacity to NCDs instead of communicable diseases only. With such an extended mandate, ECDC could centralise, analyse and interpret comparable data, provide scientific advice to Member States & contribute to the implementation of relevant EU legislation.

EKHA contributes to the hearing of the Expert Panel on Effective Ways of Investing in Health

During this hearing, which took place on 20th October 2020, EKHA, represented by Marion Braks (transplanted Kidney Patient), asked to include CKD patients as the most vulnerable group to COVID-19 in the final position paper of the Expert Panel. As a follow up, EKHA suggested similar text amendments to the report.

One week left to answer the survey on NCDs and COVID-19

The Global Non-Communicable Disease NCD Alliance, is undertaking a comprehensive online consultation of people living with non-communicable disease including patients and carers.

You can respond to the survey here until 25 October 2020 (available in English, French and Spanish).

EKHA input on the new EU pharmaceutical strategy

Over the summer, EKHA has sent its contribution to the public consultation on the EU pharmaceutical strategy. In this paper, EKHA is calling for ambitious action to improve the availability and affordability of innovative drugs and devices for the treatment of kidney failure.

ECDA Open Letter to AGRIFISH Council – Front of Pack Nutrition labelling

On the occasion of World Food Day and ahead of the next AGRIFISH Council, ECDA has issued an open letter to Ministers responsible for Agriculture to express its support for the adoption of a harmonized, interpretative and mandatory EU front-of-pack (FOP) nutrition labelling system after seven member states have raised concerns on the implementation of such an initiative across Europe.

Read the full story and access the letter: here

EKHA sends open letter to EU policy makers: 5 key recommendations to improve prevention, treatment & care of Chronic Kidney Disease in the aftermath of COVID-19

On 22 September, EKHA has sent an open letter to EU officials to ensure that kidney patients’ needs are not overlooked in current negotiations on the EU recovery plan and the overall budget.

You can access the full letter here.

EKHA, on behalf of ECDA, meets with European Health Commissioner Kyriakides to discuss the EU response to chronic diseases

On 18 September, Prof. Raymond Vanholder, on behalf of the European Chronic Disease Alliance (of which EKHA holds the presidency), met with the Commissioner for Health Stella Kyriakides to discuss chronic disease prevention and control in Europe, the EU4Health programme and Europe’s Beating Cancer plan. The Commissioner reaffirmed her commitment to do more for Europeans’ health, in particular in the field of chronic disease, in the aftermath of COVID-19.

Read the full article here.

EKHA contributes to article: ‘Funding kidney research as a public health priority: challenges and opportunities’

The new article published in Nephrology Dialysis Transplantation (NDT) discusses the important role that scientific societies can play in interacting with funding bodies to optimize the allocation of research funding in Europe.

Read more and access the full article via the link here.

2020 European Kidney Forum recording

The full recording of the 2020 European Kidney Forum webinar on improving organ donation and transplantation in the EU is available online via this link.

Read more about the webinar on the EKHA website.

EKHA’s latest publication on dialysis reimbursement and distribution of kidney replacement therapies

EKHA has recently published a new article entitled ‘A call for harmonization of European kidney care: dialysis reimbursement and distribution of kidney replacement therapies’ in the Nephrology Dialysis Transplantation (NDT) Journal.  A summary of the article’s key findings can be found here.

LINKS AND ATTACHMENTS

EKHA website: http://ekha.eu/
EKHA Email Contact: info@ekha.eu

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