The ERA-EDTA has recognized the need 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’ morbility/mortality as well as the socio-economical impact of dialysis and transplantation in Europe. The realization of the need of a common effort, and even more to tailor the actions on a European level, triggered the creation of the European Kidney Health Alliance (EKHA) in 2007. The EKHA is an alliance of four societies: besides the ERA-EDTA, the European Kidney Patients’ Federation (CEAPIR), the European Dialysis and Transplant Nurses’ Association/European Renal Care Association (EDTNA/ERCA), The International Federation of Kidney (IFKF) and the International Society of Nephrology (ISN). The EKHA management committee, which includes two representatives of ERA-EDTA nominated by the Council, works closely with the people involved in the European health organization to increase the awareness on CKD throughout Europe.
|Welcome to WKD in the EU parliament - Norbert Lameire|
|Chronic Kidney Disease Can dialysis be prevented? - Ron Gansevoort|
|EKHA MEP 2013 - Per Ake Zillen|
Date published: December 2 2013
To help patients manage their chronic heart and kidney disease, the European Union has awarded 2,6 million euros to the CARRE project. A group of interdisciplinary researchers will develop personalised alerting, planning and educational services. This will empower patients, and both professionals and patients will be able to make shared informed decisions on the disease.
Cardiorenal syndrome is the condition characterised by simultaneous kidney and heart failure while the primarily failing organ may be either the heart or the kidney. Very often the dysfunction occurs when the failing organ precipitates the failure of the other.
Current studies estimate that 9-16% of the overall population is at risk or at the onset of chronic kidney disease, while chronic heart failure amounts to 1-2% of total healthcare costs and end-stage renal disease for more than 2% of total healthcare.
Managing or even preventing this complex but common situation can be challenging: Comorbidities require care provision by different medical specialities while addressing a chronic patient trying to lead a normal life.
According to Robert Johnstone of the International Alliance of Patient Organizations there is a clear need for "patients to get up off their knees"!
Interlinked clinical information
To tackle this problem, the European Commission has decided to fund the CARRE project. This project will use internet aware sensors and other sources of medical information to provide dynamically interlinked clinical information personalized to the patient.
Patients and clinicians will be able to visualise, understand and interact with this linked knowledge via a set of decision support service in an all-inclusive and integrated approach the patient with (or at risk of) cardiorenal disease and comorbidities.
The CARRE consortium consists of 6 partners from 4 countries (Greece, United Kingdom, Lithuania and Poland) and is coordinated by the Democritus University of Thrace in Alexandroupoli, Greece.
More info: www.carre-project.eu
Contact person: Eleni Kaldoudi (Democritus University of Thrace, Greece)
The full CARRE press release
Horizon 2020 Health Open Info Days - Health - Research & Innovation - European Commission
Health Open Info Day on November 22, 2014 - aimed at informing all stakeholders of the specificities and procedures to apply for funding under Horizon 2020.
For more details click here.
Updated numbers, timeline and presentation for HORIZON 2020
Running from 2014 to 2020 with a budget of just over €70 billion, the EU’s new programme for research and innovation- Horizon 2020 - is part of the drive to create new growth and jobs in Europe. Horizon 2020 provides major simplification through a single set of rules. It will combine all research and innovation funding currently provided through multiple framework programmes under one heading. The proposed support for research and innovation under Horizon 2020 will:
• Strengthen the EU’s position in science with a dedicated budget of € 24 341 million. This will provide a boost to top-level research in Europe, including the very successful European Research Council (ERC).
• Strengthen industrial leadership in innovation € 17 015 million. This includes major investment in key technologies, greater access to capital and support for SMEs.
• Provide € 30 956 million to help address major concerns shared by all Europeans such as climate change, coping with the challenge of an ageing population, developing sustainable transport and mobility, making renewable energy more affordable, or ensuring food safety and security.
Please note that DG Research has updated its webpages on Horizon 2020 with new numbers, timeline and presentation. Please see below for more information:
• Horizon 2020 - the Framework Programme for Research and Innovation - Numbers updated
• Horizon 2020 - the Framework Programme for Research and Innovation - Timeline updated
• Horizon 2020 - the Framework Programme for Research and Innovation - Presentation updated
Important Lobbying Result of EKHA!
Progress report on the Action Plan on Organ Donation & Transplantation: shorter announcment for use with your member societies
ECDA Message to ENVI Members regarding the Tobacco Products Directive Vote
EKHA is part of ECDA, and ERS (European Respiratory Society) is also one of the ECDA partners. ERS has asked all ECDA partners to sign their petition on TPD (Tobacco Products Directive).
Agreement reached on Horizon 2020:
After six months of negotiations, the European Parliament and the Council this week (June 27, 2013) reached agreement on Horizon 2020, the EU's Framework programme for research for the period 2014-2020. This agreement allows for the preparation of the 2014 calls. The budget for H2020 is €70billion.
Political agreement on the EU's future budget 2014 – 2020:
Today (June 27, 2013) the EU’s Multiannual Financial Framework has finally been approved. The overall package is worth some €960 billion to be dispersed between 2014 and 2020. Funding for Horizon 2020 is included and the amount going to health research is the expected amount – proposed budget: €2.75bn
For more details click here.
NEW MEP TWINNING PROGRAM WITH NATIONAL SOCIETIES OF NEPHROLOGY!
Agenda MEP Kidney Health June 2013
MEP Group for Kidney Health Brochure 2013
Photos from the MEP event in the European Parliament - June 18th, 2013
ERA-EDTA supports European Chronic Disease Alliance open letter to EU Commission President José Manuel Barroso calling for EU political action on chronic diseases.
As member of EKHA, ERA-EDTA is delighted to announce EKHA’s participation in the EConDA project as collaborating partner. The EConDA (Economics of Chronic Diseases) project aims to examine the best method for assessing cost-effectiveness of interventions to prevent chronic diseases. Secondly, it aims to develop a forecasting model that estimates the future cost burden of these diseases and cost impact of interventions which aim to prevent them. The EConDA project has received funding from the European Union in the framework of the Health Programme 2007-2013.
DG SANCO - State of Play of the Health for Growth Programme (2014-2020)
Here you will find the latest information regarding the DG SANCO program - State of Play of the Health for Growth Programme (2014-2020), which should be adopted in Parliament before the end of the year (2012). Please find the Commission’s update attached or click here to access the State of Play of the Health for Growth Programme (2014-2020) online.
As a summary: Health for Growth is a € 446 million programme for the 7-year period of 2014 – 2020. HFG will focus on fostering cost-effective and innovative solutions to improve healthcare provision in a time of economic challenges and is designed to make national health systems more responsive and sustainable. This will be done in part through the pooling of resources and know-how between EU countries to address common problems and through engaging all stakeholder including all public authorities involved in healthcare, private bodies, NGOs and interest groups, etc.
The current state of play is that negotiations underway between the Parliament, the Council and the Commission under the guidance of the Cypriot Presidency. The next meeting is on the 27th November, and the Commission is hoping to reach agreement at the before the end of the year.
Interesting to note is that the programme will stress: participation of non-governmental organisations in projects, joint-actions co-financed by Member States, and operating grants , thus acknowledging the importance of public involvement.
Intelligence in Science – EU Science: Global Challenges, Global Collaborationconference
A joint conference of the Irish Council Presidency and the European Parliament placing EU research at the centre of a global discussion on the scientific response to global societal challenges, bringing together scientists and science policymakers from 100 countries.
ISC Intelligence in Science, in conjunction with Mr Sean Kelly MEP and other Members of the European Parliament, is proposing a major conference to be held at the European Parliament, in March 2013, to address the scientific response to global societal and economic challenges. The event will take place in Brussels under the Irish Presidency of the Council of the EU, which begins on January 1st 2013, and would bring together potential partners from across 100 countries at a time when many research ideas and project proposals are put forward. The purpose of the event will be to maximise the impact of Horizon 2020 in terms of global collaborative science and the scientific response to global societal challenges.
The event will come at a crucial time for the future of R&D funding in Europe. The EU’s institutions are currently negotiating legislative proposals for R&D funding over the period 2014 to 2020. The European Commission has proposed $80b in funding for Horizon 2020, the next Framework Programme for Research and Development. The Commission proposals for EU Cohesion Policy over the same time period also include significant levels of support for R&D capacity building. Ireland will take over the EU Council Presidency at a vitally important juncture in the negotiation process concerning these proposals. The Presidency will also come at a time when R&D stakeholders are putting forward their priorities and plans for the remainder of the current decade.
Date and location
European Parliament, Brussels, March 4th to March 8th, 2013
The conference will have three primary components:
- Plenary sessions in the European Parliament Hemicycle
- Technical seminars
- Consortium building meetings
Plenary sessions will address key global societal challenges at a macro level and explore the potential role of global collaboration in responding to these challenges. Technical seminars will allow more detailed discussion of specific technical obstacles that must be overcome to enable such collaboration to succeed. Consortium building meetings will facilitate researchers in identifying and meeting with potential partners as they move towards the launch of Horizon 2020. It is expected that the conference will yield 100 projects involving partners from across 100 countries.
Sample event outline:
Monday: Set-up, registration, welcome dinners
Tuesday-Wednesday: Plenary Session in the European Parliament Hemicycle
Tuesday-Thursday: Technical Seminars
Thursday-Friday: Consortium Building Meetings
Registration will commence in October 2012.
Please follow the link for more information
Invitation to IDF Europe World Diabetes Day events - 14 November 2012
Simon Busuttil MEP and the International Diabetes Federation European Region (IDF Europe) invite you to celebrate World Diabetes Day on 14 November 2012 at the European Parliament in Brussels.
Join us in a series of events around Healthy Eating, Healthy Living aimed at raising awareness on diabetes and promoting healthy diet and physical activity as prevention of diabetes and diabetes-related complications as well as self-management and self-care for children and adults living with diabetes.
Join us for:
• Breakfast Debate: Healthy eating, Healthy living
Want a healthy start to your day? Join us at our breakfast meeting.
Healthy eating, food policy, and sports and diabetes will be amongst the subjects covered during our breakfast debate. Attached, you will find the agenda of the event.
When? Wednesday 14 November, 08h15-09h15
Where? Member’s Salon, European Parliament, Brussels - RSVP to Lala@idf-europe.org by 30 October 2012 latest.
• World Diabetes Day Lunch
Continue with a healthy lunch at the canteen of the European Parliament. Choose our vitality dish on offer all week.
When? From Monday 12 to Friday 16 November
Where? Canteen of the European Parliament, Brussels
• Debunking the Sugar Myth
People with diabetes cannot eat sweets: true or false? Join us at our stand to find out.
When? Wednesday 14 November, 14h30-16h30
Where? ASP 1 Zone G-H, European Parliament, Brussels
• Diabetes Exhibition
Come at our stand and learn about diabetes and healthy eating and how this is linked to EU food policy. Professional cyclist Kyle Rose and triathlete Nenad Simunko will also answer all your questions about diabetes and sports.
When? Wednesday 14 November (our stand will also be open from Monday 12 to Friday 16 November)
Where? ASP 1 Zone G-H, European Parliament, Brussels
• You can also get your blood glucose tested at the TRK stand on the European Parliament esplanad
On July 19, 2012 a new Stakeholder Consultation was launched by the European Commission on the subject of Public-Private-Partnerships (PPP) in Life Sciences.
This new enquiry is looking in particular at the Innovative Medicines Initiative (IMI) which was initiated last year (2011) and based on the success of it, the Commission is now exploring whether under Horizon 2020 a renewed PPP of this sort should be launched.
Please see here for more information.
This consultation is comprised of an online questionnaire, which is roughly 17 pages and should take @1 hour to complete.
Positive feedback on the added value of such PPPs and the Innovative Medicines Initiative could help to secure the availability of similar programmes in Horizon 2020, thus allowing more EU funding for medical research. The deadline is 4 Oct 2012.
The European Commission has created a new website called Heidi.
Heidi , meaning Health in Europe: Information and Data Interface, is a comprehensive search tool for European health information and data. It contains information about health status, determinants, diseases, health systems, trends, institutional and policy aspects.
You will find below a link to the section about CKD. https://webgate.ec.europa.eu/sanco/heidi/index.php/Heidi/Major_and_chronic_diseases/Chronic_kidney_disease
The information there has been taken out of the Eugloreh report to which EKHA has contributed and that you can find under the following link: : http://www.eugloreh.it/default.do
Experts have the possibility to edit, update or write information in Heidi by applying as editor through filling the application form that you can find under this link: https://webgate.ec.europa.eu/sanco/heidi/index.php/Special:ApplicationForm.
All ERA-EDTA members are therefore invited to go to these links to learn more about this matter and, eventually, to edit, up-date or write information in Heidi.
EKHA is very active in pushing kidney related issues on the E.A. Agenda. Here is a letter that on Monday, May 14, 2012 is being sent to Mrs. Grossetete, rapporteur for the Health for Growth program (Public Health).
Letter to Mrs. Grossetête
EKHA Policy Paper 2012
EKHA-WKD 2012 - Press Release
EKHA-WKD 2012 - Press Conference
MEP Group for Kidney Health Brochure
EKHA-WKD 2012 Dinner Speakers Biographies
Prof Vanrenterghem EKHA-WKD 2012 Dinner Seminar Presentation
Prof Abramowicz EKHA-WKD 2012 Dinner Seminar Presentation
Priorities for CV Health in the Americas
The European Health Interview Survey (EHIS) was originally developed between 2003 and 2006 jointly by the Commission and Member States to measure health status, life style (health determinants) and health care services throughout the EU. It consists of four modules on health status, health care, health determinants, and background variables. The first survey took place between 2006 and 2009 and had no questions about renal disease. The second survey is planned for 2014 and is now under development. The initial draft again had no questions about kidney health.
ECDA (European Chronic Diseases Alliance) Call.
ERA-EDTA is one of the five active members of EKHA.
EKHA is a very important partner of ECDA .
The call for action from the European Chronic Disease Alliance (ECDA) was sent to EU heads of States/Governments on Tuesday . It was also sent it to the Polish ambassador to the EU (holding the EU Presidency), Commission President Barroso, Commission Vice-President Ashton (foreign affairs chief of the EU) and Commisioner for health, Mr Dalli.
Innovative approaches for chronic disease in public health and healthcare systems’
On December 7, 2010, the European Council approved the Council conclusions on ‘Innovative approaches for chronic disease in public health and healthcare systems’ – for the full text click here.
The Belgian Presidency has put forward an ambitious plan to improve the management and prevention of chronic diseases by developing patient-centred policies.
Member States and the Commission are invited to initiate a ‘Reflection process’ aiming to identify options to optimize the response to the challenges of chronic diseases and cooperation between Member States. The outcomes will be summarized in a reflection paper by 2012.
As you will see, the Council conclusions provide an excellent framework within which to push CKD and chronic diseases more generally through the Chronic Disease Alliance, of which EKHA is a member. It proposes concrete action both from the EU and Member States, and national action plans for CKD might be an excellent way of making progress.