By Knud Erben

The European Kidney Patients' Federation (CEAPIR) was founded in 1981 in Paris and is the umbrella organization for 22 national kidney patient associations throughout Europe. CEAPIR's organizational seat is in Vienna, with the international office located in Germany. The official language of the Federation is English.  All of the member associations must be patient-led groups dedicated to the goal of helping fellow patients. Members from the representative countries work to provide access to care and quality health outcomes for patients.  Representatives come from such places as Croatia, Germany, Italy, Netherlands, Sweden, Latvia, Ireland, France, Bulgaria and numerous other locations.

CEAPIR was founded by a group of patients who saw a need to bring together European patients to raise end-stage renal disease to the forefront of the European Union's public health agenda.  Today, the Federation continues to be run by patient volunteers.  The goals of CEAPIR members are much like the goals of AAKP members. They strive for a quality standard of ESRD treatment in Europe and work to provide information on patient needs to other organizations involved in renal therapy.

The main aims of CEAPIR are to:

• Offer a kidney patient's view on an international level.
• Offer a European view on national kidney matters.
• Raise end stage renal disease (ESRD) on the European Union's (EU) public health agenda by promoting a general kidney disease policy to protect the interests of kidney patients and their relatives, by monitoring EU developments in the field of kidney disease and by making legislative proposals.
• Promote, develop and support quality management in Renal Replacement Therapy (RRT) in medical and non-medical matters for a European quality standard in RRT.
• Promote organ donation and transplantation.
• Promote the rights and strengthen the position of all kidney patients and their relatives to participate in important decisions (well-being, treatment, social security and living conditions).
• Develop a network with all organizations and bodies involved in ESRD policies (European Kidney Network) and provide a vehicle, which will collect and disseminate information and provide services for everybody. (European Kidney Center)
• Support and represent the aims of CEAPIR members on a national and European level.

To ensure its goals are met, CEAPIR has developed a kidney disease policy to protect the interests of ESRD patients and their families.  Called CEAPIR's 12 Key Objectives, the Federation is adamant that in order for patients to receive quality treatment these objectives must be met.  CEAPIR members speak at regional, national and international meetings about what must be done by the renal community to provide quality treatment that keeps pace with the advances and developments in the field of renal care.

The 12 CEAPIR Objectives are:

1. All patients must receive medical treatment, irrespective of their age and health conditions.
2. After being informed about all possible methods of treatment, patients must receive suitable treatment according to their medical condition.
3. The number of donated organs available for transplants needs to be increased and public awareness must be improved.
4. Peritoneal dialysis must be available to all patients to whom it can be of use.
5. All treatment must be top quality.
6. Inoculations, medical treatments, medical staff, patients and caregivers must ensure that there is no danger of contracting hepatitis or AIDS.
7. The reuse of filters is forbidden.
8. All basic costs concerning care and treatment for ESRD patients must be covered for all patients at home and abroad.
9. Extreme care must be taken with the use of nephrotoxic medications that may lead to kidney failure.  All packets and advertisements must carry warnings.
10. CEAPIR should publish information for patients.
11. The trade in organs must be forbidden in all countries and violation should lead to severe punishment.
12. CEAPIR affirms the right of kidney patients to rehabilitation and access to work.

CEAPIR also engages in other activities that directly assist patients and their family members.  A web site at www.ceapir.org provides educational and legislative information in several different languages. The site also lists all the member associations, links to other informational sources and quality assurance tools.  The Federation publishes a magazine called European Renal Info that is designed to give patients updated information on advances in healthcare, European Union legislative initiatives and patient stories. 

Every year, a General Assembly is held. Representatives from all member associations meet to report on regional activities and prepare coalition initiatives. Between General Assemblies, the honorary Executive Committee, consisting of five members, meets two or three times.

Why is CEAPIR necessary? How can CEAPIR help the members (associations) and their members (patients)? On a national level, the members are constantly active and often work on similar goals. CEAPIR provides a way to exchange information and experiences, which leads to more effective service for kidney patients.  It promotes its members at international medical conferences and supports them on national issues. Patients benefit from the informational resources and the contacts of CEAPIR. As an example, the Portuguese kidney patient association asked CEAPIR for support when dialyzers for reuse in Portugal were contaminated and several dialysis patients died. The result: today, the reuse of dialyzers in Portugal is forbidden.

In Europe, the situation of kidney patients differs greatly from country to country. Depending on the financial, social, religious and economic background of the country, not all patients may have access to renal replacement therapy. In some countries, many more patients are on peritoneal dialysis (e.g. Great Britain) than in other countries (e.g. Germany) where hemodialysis dominates. In addition, there are big differences in the structure of the dialysis centers.  For instance, in Germany all of the dialysis units are public, whereas in Italy the facilities are all privately owned. The number and kind of kidney transplants also differs greatly from country to country, with Spain using primarily cadeveric donation and Finland relying primarily on living donation. CEAPIR believes strongly that a European standard for access be made available for all kidney patients.

CEAPIR is very honored and proud to work with AAKP. Special thanks to AAKP Executive Director Kris Robinson who supported this development from the beginning. CEAPIR is looking forward to a future that provides a close and fruitful partnership with AAKP, benefiting kidney patients and their relatives on both sides of the big pond.

CEAPIR, Eininger Strasse 10e, 80993 Munich, Germany, Phone +49 89 1495768, Fax +49 89 1416270, e-mail info@ceapir.org, Internet www.ceapir.org

Dialysepatienten Deutschlands e.V (DD) (German Kidney Patient Association)

The Dialysepatienten Deutschlands (German Kidney Patient Association) was founded in 1975 and since that time has grown continuously. The Association now has 160 local and regional groups with over 18,000 members. The members are mainly kidney patients and their relatives, but also medical staff and others concerned with kidney disease.

An honorary Executive Committee, consisting of 13 voluntary members and four full-time employees, manages our National Association.  Our organizational structure is divided into two entities.  First, we hold a yearly delegate conference in which members of our local groups meet to share program ideas, hold elections and conduct business.  Second, the Executive Committee meets four to six times a year and is comprised of six working groups.  These groups conduct the business of the Association.

The six working groups are divided as follows:

1.  Quality Management

The goals of this committee are to:

• Ensure quality outcomes in Renal Replacement Therapy
• Set initiatives with foreign affairs patient groups (e.g. CEAPIR, AAKP) 
• Maintain data

2. Social Work and Sports

The goals of this committee are to:

• Provide psychosocial help for patients and their relatives
• Develop and execute seminars
• Initiate an internal message of thanking the organ donor
• Develop projects concerning psychosocial issues of patients and their relatives

3.  Wellness and Journeys

The goals of this committee are to:

• Address the concerns of vacation dialysis
• Develop "dialysis international," a guide with addresses to dialysis units in Europe
• Develop a travel service for patients

4. Parents, Children and Youth

The goals of this committee are to:

• Deal with issues involving children, youths and young adults
• Develop and execute seminars and trade conferences for parents and youths
• Provide parents with information and guidance

5. Therapies and Rehabilitation

The goals of this committee are to develop and promote the various treatment options.

6. Finance

This committee deals with the administrative duties of the Association, including:

• Finances
• Office management
• Management of the magazine, " the dialysis patient "
• www.DDev.de

The federal office of the DD is located in Mainz, Germany and is the center of information and main office of the Association. All activities and initiatives are supported and promoted from this office. It is the "heart of the association." The main communications vehicle of the DD is the magazine "the dialysis patient."

Knud Erben is Secretary General of CEAPIR and Vice Chairman of Dialysepatienten Deutschlands. He was treated as a hemodialysis patient for over 10 years and has had a working transplant since 1991.

This article originally appeared in aakpRENALIFE, Vol. 16, No. 3, November 2000.

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