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EKHA NEWSLETTER

June 2012

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EU PUBLIC HEALTH PROGRAMME Page 3

EU MEDICAL RESEARCH Page 3

CEAPIR SURVEY Page 4

FILM ON KIDNEY TRANSPLANTATION Page 4

EUROPEAN CHRONIC DISEASE ALLIANCE Page 5

2012 WORLD KIDNEY DAY Page 6

EUROPEAN NEWS Page 7

EVENTS Page 9

EKHA NEWSLETTER – June 2012

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EU PUBLIC HEALTH PROGRAMME

The Health for Growth Programme, currently being

discussed by the Council and the European Parliament

suggests a budget of 446 million Euros, i.e over 60 million

Euros per year.

The program aims to foster innovation in healthcare,

ensure more viable healthcare systems and improve well-

being of citizens.

The new Public Health Program will run from 2014 to

2020. Each year, a program and calls for proposals will be

published.

EKHA NEWSLETTER - June 2012

EKHA contacted Mrs Grossetête, rapporteur on the program, in order to ensure a reference to renal diseases

would be included. A letter and a complete information about CKD was sent to her early May.

The program will be discussed and voted in the ENVI (Environment and Health) committee on 20 June.

EU MEDICAL RESEARCH

Horizon 2020 – the EU Framework Programme for Research

and Innovation – is the financial framework implementing

Innovation Union. Running from 2014 to 2020 with a €80

billion budget, it will combine all research and innovation

funding currently provided in the Framework Programme

for Research and Technical Development, the innovation

related activities of the Competitiveness and Innovation

Framework Programme and the European Institute of

Innovation and Technology.

It was adopted by the Commission on 30 November 2011

and is currently being discussed in the Parliament and the

Council.

The rapporteur for health is Christian Silviu Busoi. EKHA sent

a letter to Mr. Busoi requesting the addition of a reference

to renal diseases in the program and is currently looking to

meet him. The program will be voted in the ITRE committee

on 9 October 2012.

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The conclusion of the survey is :

- Patients do not get the same access to care all around Europe

- They are not equally involved in making decisions about their own disease management.

- They do not know to whom they should complain in case they are dissatisfied with their care.

- They are not satisfactorily informed about all options they have when they are diagnosed with kidney

disease.

- They are often not diagnosed in time to have a say in one of the most important decisions in their lives.

The survey can be found here

CEAPIR survey on patient’s choice in dialysis

and access to treatment

EKHA NEWSLETTER - June 2012

The European Kidney Patients’ Federation (CEAPIR) carried out a

survey of patients across Europe on 'Patient choice in dialysis and

access to treatment' which aims to raise awareness of the lack of

information about renal replacement options and reveal whether

patient choice is secured. The results have been released on 26

April 2012.

The survey shows there is still a lot to do in terms of patients information and equal access to treatment.

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EKHA NEWSLETTER - June 2012

EUROPEAN CHRONIC DISEASE ALLIANCE

The European Chronic Disease Alliance met on 22 March 2012 in Brussels, during which members welcomed

and approved application for Alliance membership from the European COPD Coalition (ECC). Following the

approval of ECC membership, the Alliance is now comprised of 11 members.

Also at the meeting of 22nd March, members discussed the ECDA response to the Reflection Process on Chronic

Disease and the Alliance’s potential contribution to the European Innovation Partnership for Active and Healthy

Ageing. Other points of discussion included the creation of an ECDA website and the development of a unified

ECDA logo, which should feature all the logos of the individual member organisations.

Following the March discussion, on April 14th, the ECDA submitted its response to the stakeholder consultation

initiated by the Commission on the Reflection Process on Chronic Disease. The responses to the Commission’s

questionnaire were based on the ECDA Input Paper to the reflection process, which was jointly prepared by the

Alliance members and spear-headed by the European Respiratory Society.

During May 2012, the Alliance’s members carried out discussions around its potential involvement in the

European Innovation Partnership on Active and Healthy Ageing. The Alliance has agreed to offer informal

support and assistance to the organisations/Action Groups which will commit to the Partnership and which

could benefit from advice or data from ECDA members.

The next meeting of ECDA is scheduled for 26th June 2012 in Brussels.

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2012 EKHA WORLD KIDNEY DAY EVENT

EKHA organized its 5th World Kidney Day campaign in Brussels on 6 March. The 2012 World Kidney Day

focused on the positive outcome of kidney transplantation and the life-saving aspect of organ donation.

This year’s event was divided in two parts: a press conference at lunch time and the MEP Group for Kidney

Health dinner in the evening.

The dinner was hosted by Frieda Brepoels MEP.

Both the press conference and the dinner in the European Parliament were a success. Journalists present

at the press conference showed a great interest in the issue currently faced by the EU in terms of kidney

transplantation.

THE MEP group for kidney health dinner attracted 50 participants, amongst which several MEP’s and

Health Attachés.

The event was sponsored by Abbott, Novartis and Roche

EKHA NEWSLETTER - June 2012

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Heidi Health Wiki launched by the Commission

Scotland first to introduce minimum price on alcohol

EKHA NEWSLETTER - June 2012

EUROPEAN NEWS

Scotland set the first legally-binding minimum price within the EU. From April

2013 onwards a 0.50£ (0.63€) minimum price for a unit of alcohol will be

introduced. The aim of this bill is to decrease crime level and to improve health

of the Scottish population. “It will help Scotland achieve a ‘cultural shift’ in its

unhealthy attitudes to alcohol,” said Nicola Sturgeon, the Scottish health

secretary. "This policy will save lives – it’s as simple as that," she said.

Read the full article here

Climate changes and environment have an impact on health

“Ignorance ain’t bliss: it’s time to recognise the impact of the environment

and climate on health” says Annika Ahtonen, Policy Analyst for European

Policy Centre.

Read the commentary here

Heidi (Health in Europe: Information and Data Interface) has been

launched by the European Commission's Directorate-General for

Health & Consumers on 3 May 2012. Although Heidi is hosted by the

Commission, the contents will be written by European health experts

who are consequently responsible for their contributions and can

directly upload and edit information.

Heidi is an internet based tool; a new way to collect, up-date and share

information about health in Europe.

For more information click here

Scotland first to introduce minimum price on alcohol

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EKHA NEWSLETTER - March 2012

EUROPEAN NEWS

The 2012 Aging Report

The population of the EU is projected to reach 517

million in 2060. Nearly one third of the citizens will then

be aged 65 or over, says the Aging Report 2012.

According to the report published in May, the age profile

of the EU is expected to change dramatically in the

coming decades. The population of the EU will be slightly

higher in 2060 (517 million, up from 502 million in 2010).

While at the same time it will be much older. While

longer lives are a major achievement of European

societies, the ageing of the population also poses

significant challenges for their economies and welfare

systems.

More information to be found here

Doctors group warns EU health care access shrinking

Access to health care is declining in Europe, and Greece in particular faces a humanitarian crisis as it cuts

health and social spending, aid group Doctors of the World warned. Even priority patients such as pregnant

women and children are not getting the care they need in large European cities -- a problem that is linked to,

but also larger than, the eurozone crisis, told Olivier Bernard, President of medical charity Doctor of the Word.

Read the full article here

Find more on the health situation of Greece here

The European Commission wants new

antibiotics

“A post-antibiotic era means, in effect, an end to

modern medicine as we know it. Things as common

as strep throat or a child’s scratched knee could once

again kill,” Dr. Margaret Chan director general of the

World Health Organization said. In order to solve this

issue, the European Commission has teamed up with

a handful of pharmaceutical and biotech companies

to launch a new research program that will see the

drugmakers and scientists share information that

could be useful in developing new drugs.

Pharmaceutical companies usually do not want to

throw cash at antibiotics R&D. The problem is that

antibiotics, although one of the most widely used

medicines, don’t generate the financial returns they

get from other drugs. And it is these financial rewards

that drive investor sentiment, and share prices.

Read more here.

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EUROPEAN EVENTS

13-16 June 2012 HAI-Net - Annual meeting of healthcare-associated infections surveillance

network Stockholm

18-19 June 2012 Health Economics Symposium: creating a personalized medicine paradigm

for oncology Luxembourg

19-20 June 2012 5th meeting of the EUCERD (European Union Committe of Experts on Rare

Diseases) Luxembourg

27 June 2012 Alcohol harms you, others and the society - why does Europe need an

alcohol strategy? Brussels

28 June - 01 July 2012 Sub-nuclear structures and disease Cambridge

28 June - 01 July 2012 12th International symposium on mucopolyssaccharidosis and related

diseases Noordwijkerhout

08-12 July 2012 World Federation of Hemophilia World Congress Paris, France

09-11 July 2012 Active Ageing – the Potential for Society, Conference and Brokerage Event

Dublin

27-29 September 2012 9th European IUHPE Conference on Health Promotion Tallinn

28 February 2012 Regional and Local Initiatives Promoting Healthy and Active Ageing

Brussels, Belgium

8 March 2012 The Nutrition and Health Claims Regulation: Dealing with the present

Planning for the Future Brussels, Belgium

22 March 2012 Healthcare in Europe Geneva, Switzerland

27 March 2012 6th Annual Nutrition and Lifestyle Conference: Towards a Healthier

Future for European Citizens Brussels, Belgium

16-17 April 2012 Innovation in Healthcare without borders Brussels, Belgium

18-20 April 2012 Global eHealth Strategies Symposium Luxembourg

3-4 May 2012 High Level Conference on EU Health Programmes: Results and Future Perspectives Brussels, Belgium

7-9 May 2012 eHealth Week 2012 Copenhagen, Denmark

9-12 May 2012 19th European Congress on Obesity Lyon, France

23-24 May 2012 8th Annual World Care Congress Amsterdam, the Netherlands

EKHA NEWSLETTER - March 2012

EKHA MEMBERS’ EVENTS

7-10 June 2012 ISN Forefronts Symposium: Systems Biology and the Kidney, Ann Arbor,

Michigan, USA

12-14 June 2012 The Renal Association Conference 2012 Gateshead, England

15-18 September 2012 41st EDTNA/ERCA International Conference Strasbourg, France

20-23 September 2012 ISN Nexus Conference 2012: Bone and the Kidney Copenhagen, Denmark

5-7 October ISN Forefronts Symposium: Tubulointerstitial Disease in Diabetic

Nephropathy, Melbourne, Australia

6-9 October 2012 XLII National Congress of Spanish Society of Nephrology Maspalomas,

Gran Canaria, Spain

6-9 October 2012 4th Annual Meeting of the German Society of Nephrology Hamburg,

Germany

18-21 May 2013 50th ERA-EDTA Congress Istanbul, Turkey

31 May-4 June 2013 ISN World Congress of Nephrology 2013 Hong Kong