What we do and do not know about women and kidney diseases; Questions unanswered and answers unquestioned: Reflection on World Kidney Day and International Woman's Day.

Chronic kidney disease affects approximately 10% of the world's adult population: it is within the top 20 causes of death worldwide, and its impact on patients and their families can be devastating. World Kidney Day and International Women's Day in 2018 coincide, thus offering an opportunity to reflect on the importance of women's health and specifically their kidney health, on the community, and the next generations, as well as to strive to be more curious about the unique aspects of kidney disease in women so that we may apply those learnings more broadly. Girls and women, who make up approximately 50% of the world's population, are important contributors to society and their families. Gender differences continue to exist around the world in access to education, medical care, and participation in clinical studies. Pregnancy is a unique state for women, offering an opportunity for diagnosis of kidney disease, but also a state where acute and chronic kidney diseases may manifest, and which may impact future generations with respect to kidney health. There are various autoimmune and other conditions that are more likely to impact women with profound consequences for child bearing, and on the fetus. Women have different complications on dialysis than men, and are more likely to be donors than recipients of kidney transplants.  In this editorial, we focus on what we do and do not know about women, kidney health, and kidney disease, and what we might learn in the future to improve outcomes worldwide.

[What we do and do not know about women and kidney diseases; Questions unanswered and answers unquestioned: Reflection on World Kidney Day and International Woman's Day].

On behalf of the World Kidney Day Steering Committee Chronic kidney disease affects approximately 10% of the world's adult population: it is within the top 20 causes of death worldwide, and its impact on patients and their families can be devastating. World Kidney Day and International Women's Day in 2018 coincide, thus offering an opportunity to reflect on the importance of women's health and specifically their kidney health, on the community, and the next generations, as well as to strive to be more curious about the unique aspects of kidney disease in women so that we may apply those learnings more broadly. Girls and women, who make up approximately 50% of the world's population, are important contributors to society and their families. Gender differences continue to exist around the world in access to education, medical care, and participation in clinical studies. Pregnancy is a unique state for women, offering an opportunity for diagnosis of kidney disease, but also a state where acute and chronic kidney diseases may manifest, and which may impact future generations with respect to kidney health. There are various autoimmune and other conditions that are more likely to impact women with profound consequences for child bearing, and on the fetus. Women have different complications on dialysis than men, and are more likely to be donors than recipients of kidney transplants. In this editorial, we focus on what we do and do not know about women, kidney health, and kidney disease, and what we might learn in the future to improve outcomes worldwide.

Vegan-vegetarian diets in pregnancy: danger or panacea? A systematic narrative review.

BACKGROUND: Although vegan-vegetarian diets are increasingly popular, no recent systematic reviews on vegan-vegetarian diets in pregnancy exist. OBJECTIVES: To review the literature on vegan-vegetarian diets and pregnancy outcomes. SEARCH STRATEGY: PubMed, Embase, and the Cochrane library were searched from inception to September 2013 for pregnancy and vegan or vegetarian Medical Subject Headings (MeSH) and free-text terms. SELECTION CRITERIA: Vegan or vegetarian diets in healthy pregnant women. We excluded case reports and papers analysing vegan-vegetarian diets in poverty and malnutrition. Searching, paper selection, and data extraction were performed in duplicate. DATA COLLECTION AND ANALYSIS: The high heterogeneity of the studies led to a narrative review. MAIN RESULTS: We obtained 262 full texts from 2329 references; 22 selected papers reporting maternal-fetal outcomes (13) and dietary deficiencies (nine) met the inclusion criteria. None of the studies reported an increase in severe adverse outcomes or in major malformations, except one report of increased hypospadias in infants of vegetarian mothers. Five studies reported vegetarian mothers had lower birthweight babies, yet two studies reported higher birthweights. The duration of pregnancy was available in six studies and was similar between vegan-vegetarians and omnivores. The nine heterogeneous studies on microelements and vitamins suggest vegan-vegetarian women may be at risk of vitamin B12 and iron deficiencies. AUTHOR'S CONCLUSIONS: The evidence on vegan-vegetarian diets in pregnancy is heterogeneous and scant. The lack of randomised studies prevents us from distinguishing the effects of diet from confounding factors. Within these limits, vegan-vegetarian diets may be considered safe in pregnancy, provided that attention is paid to vitamin and trace element requirements.

Nutrition for the older adult - Current concepts. Report from an ESPEN symposium.

BACKGROUND & AIMS: In view of the global demographic shift, a scientific symposium was organised by the European Society for Clinical Nutrition and Metabolism (ESPEN) to address nutrition-related challenges of the older population and provide an overview of the current state of knowledge. METHODS: Eighteen nutrition-related issues of the ageing global society were presented by international experts during the symposium and summarised in this report. RESULTS: Anorexia of ageing, dysphagia, malnutrition, frailty, sarcopenia, sarcopenic obesity, and the metabolic syndrome were highlighted as major nutrition-related geriatric syndromes. Great progress has been made in recent years through standardised definitions of some but not all syndromes. Regarding malnutrition, the GLIM approach has shown to be suitable also in older adults, justifying its continuous implementation. For anorexia of ageing, a consensus definition is still required. Intervention approaches should be integrated and person-centered with the aim of optimizing intrinsic capacity and maintaining functional capacity. Landmark studies like EFFORT and FINGER have impressively documented the potential of individualised and multifactorial interventions for functional and health benefits. Combining nutritional intervention with physical training seems particularly important whereas restrictive diets and drug treatment should generally be used with caution because of undesirable risks. Obesity management in older adults should take into account the risk of promoting sarcopenia. CONCLUSIONS: In the future, even more individualised approaches like precision nutrition may enable better nutritional care. Meanwhile all stakeholders should focus on a better implementation of currently available strategies and work closely together to improve nutritional care for older adults.

Kidney biopsy in pregnancy: evidence for counselling? A systematic narrative review.

BACKGROUND: Kidney diseases, which have a prevalence of 3% in women of childbearing age, are increasingly encountered in pregnancy. Glomerulonephritis may develop or flare up in pregnancy, and a differential diagnosis with pre-eclampsia may be impossible on clinical grounds. Use of kidney biopsy is controversial, but a systematic review has not been carried out to date. OBJECTIVES: To review the literature on kidney biopsy in pregnancy, with a focus on indications, risks and timing. SEARCH STRATEGY: Medline, Embase, CHINAL and the Cochrane Library were searched in September 2012, with 'pregnancy' and 'kidney biopsy' used as MESH and free terms, for the period 1980-2012. Results were filtered for 'human' if this option was available. SELECTION CRITERIA: Biopsies during pregnancy and within 2 months after delivery. Case reports (fewer than five cases) and kidney grafts were excluded. Paper selection was performed in duplicate. DATA COLLECTION AND ANALYSIS: Data were extracted in duplicate. The high heterogeneity in study design necessitated that the review be narrative, except for data on adverse events, which were analysed with regard to the timing of kidney biopsy. MAIN RESULTS: Of 949 references, 39 were selected, providing data on 243 biopsies in pregnancy and 1236 after delivery (timing was unclear in 106 women). The main aims of the studies were to define morphology in pre-eclampsia (23 studies), to carry out a risk-benefit analysis of kidney biopsy (11 studies), and to investigate pregnancy-related acute kidney injury (five studies). Four cases of major bleeding complications occurred at 23-26 weeks of gestation. Relevant complications were observed in 7% of women during pregnancy and 1% after delivery (P = 0.001). Kidney biopsy performed for the diagnosis of glomerulonephritis or pre-eclampsia led to therapeutic changes in 66% of cases. AUTHORS' CONCLUSIONS: The evidence on kidney biopsy in pregnancy is heterogeneous, but a significantly higher risk of complications (relative to postpartum biopsy) was found, with a possible peak at around 25 gestational weeks.

NEMO syndrome (incontinentia pigmenti) and systemic lupus erythematosus: a new disease association.

Congenital diseases are increasingly being recognised in adults because of clinical mimicry, variable clinical picture or rarity of the disease; pregnancy is a valuable diagnostic occasion. The present case is the first report of an association report between NEMO syndrome (an acronym of the mutated, non-functioning gene, NF-kB essential modulator), a rare X-linked disease, characterised by developmental anomalies, immunodepression and skin lesions, and systemic lupus erythematosus (SLE). A 35-year-old patient affected by SLE sought clinical advice in the 8th week of gestation. The diagnosis of SLE dated back to the age of 24, when multisystemic manifestations (pleuropericarditis, weight loss, alopecia, skin involvement, joint pain, kidney involvement) were observed. She had been treated with steroids since 1999; immunosuppressive drugs had been added for short periods. Developmental anomalies were present, including oligodontia, retinal problems, anomalies of the corpus callosum and pes planovalgus. Family history included multiple miscarriages, dental malformations and oligodontia and skin blistering in the first months of life. On these bases, incontinentia pigmenti (IP; or NEMO syndrome) was diagnosed and confirmed by genetic testing. The NEMO gene is implicated in immune deficiencies as well as in autoimmune diseases. This report may suggest a role for NF-kB essential modulator in the pathogenesis of SLE, in the context of the complex immunologic deficiencies increasingly associated with autoimmune diseases.

What we know and do not know about women and kidney diseases; Questions unanswered and answers unquestioned: Reflection on World Kidney Day and International Woman's Day.

Chronic kidney disease affects approximately 10% of the world's adult population: it is within the top 20 causes of death worldwide, and its impact on patients and their families can be devastating. World Kidney Day and International Women's Day in 2018 coincide, thus offering an opportunity to reflect on the importance of women's health and specifically women's kidney health on the community and the next generations, as well as to strive to be more curious about the unique aspects of kidney disease in women so that we may apply those learnings more broadly. Girls and women, who make up approximately 50% of the world's population, are important contributors to society and their families. Gender differences continue to exist around the world in access to education, medical care, and participation in clinical studies. Pregnancy is a unique state for women, offering an opportunity for diagnosis of kidney disease, but also a state in which acute and chronic kidney diseases may manifest, and which may impact future generations with respect to kidney health. Various autoimmune and other conditions are more likely to impact women, with profound consequences for child bearing and the fetus. Women have different complications on dialysis than men, and are more likely to be donors than recipients of kidney transplants. In this editorial, we focus on what we know and do not know about women, kidney health, and kidney disease, and what we might learn in the future to improve outcomes worldwide.

What we do and do not know about women and kidney diseases; Questions unanswered and answers unquestioned: Reflection on World Kidney Day and International Woman's Day.

Chronic kidney disease (CKD) affects approximately 10% of the world's adult population; it is within the top 20 causes of death worldwide, and its impact on patients and their families can be devastating. World Kidney Day and International Women's Day in 2018 coincide, thus offering an opportunity to reflect on the importance of women's health and specifically their kidney health, on the community, and the next generations, as well as to strive to be more curious about the unique aspects of kidney disease in women so that we may apply those learnings more broadly. Girls and women, who make up approximately 50% of the world's population, are important contributors to society and their families. Gender differences continue to exist around the world in access to education, medical care, and participation in clinical studies. Pregnancy is a unique state for women, which not only offers an opportunity for diagnosis of kidney disease, but also states where acute and chronic kidney diseases may manifest, and which may impact future generations with respect to kidney health. There are various autoimmune and other conditions that are more likely to impact women with profound consequences for childbearing, and on the fetus. Women have different complications on dialysis than men and are more likely to be donors than recipients of kidney transplants. In this editorial, we focus on what we do and do not know about women, kidney health, and kidney disease and what we might learn in the future to improve outcomes worldwide.

A peculiar pattern of expression of the transferrin receptor (CD71) by reticulocytes in patients given recombinant human erythropoietin (rHuEPO): a novel marker for abuse in sport?

To overcome the limitation of the currently adopted direct method to detect recombinant Human Erythropoietin (rHuEpo) abuse in sport, indirect analysis of blood parameters are increasingly used as part of the anti-doping strategies. The aim of the present work is to identify whether immunophenotype modifications on erythroid cells may be indicative of previous rHuEPO administration. The study was conducted on dialyzed patients under treatment with rHuEPO (DPT). Dialyzed patients without rHuEPO therapy (DP) and volunteer donors (H) were used as controls. The analysis of erythroid cells immunophenotype, performed using a multiparametric flow cytometry technique, showed a peculiar pattern of CD71 expression following rHuEPO treatment. In particular CD71 showed an increased expression in mature and intermediate reticulocytes and a surprisingly decreased expression in immature reticulocytes. In conclusion, the analysis of reticulocyte maturation stages with TO/CD71 double staining may be considered as a valid alternative indirect method for the detection of rHuEPO abuse.

Drug use and kidney donation: what are high-risk behaviors today?

BACKGROUND: "Social risk behaviors" are usually considered as contraindications for organ donation. The organ shortage, however, necessitates expansion of the donor pool. Reconsideration of the policy toward substance abusers may be important. Opinions of the overall population may be of use to define this cultural-sensitive issue. METHODS: A semistructured questionnaire on organ donation, including opinions on drug use (cannabis and cocaine), was administered to various groups of the general public and caregivers: high school students (liceo classico: 59 students, median age 18 years; istituto tecnico: 108, age 17); first- and fourth-year medical school (77, age 19; 46, age 22); continuing medical education (44, age 32); third-year nursing school (31, age 23); "senior citizen university" (51, age 63). RESULTS: Cannabis use was mainly accepted for kidney donation (48.6% yes, 26.6% no, 29.8% uncertain/blank), but cocaine use was not (22.1% yes, 44.2% no, 33.7% uncertain/blank). In the univariate analysis, opinions differed according to age, sex, and belonging to the health care teams upon multivariate analysis being a member of the health care team was the strongest predictor of responses (P<.01). CONCLUSION: It is difficult to define social risk behaviors. Since opinions are important for organ donation, further studies and discussion are needed to periodically analyze our policies.

Is male homosexuality still a cultural taboo for kidney donation?

BACKGROUND: Among the so-called social risk behaviors, male homosexuality is probably one of the most interesting and difficult taboos. Because of changing attitudes of the general population toward irregular sexual behaviors, often considered as markers of unhealthy life styles, there is a need to reconsider at least the most important one-homosexuality. METHODS: A semistructured questionnaire included opinions on homosexuality with respect to kidney donation: Would you consider a male homosexual as a kidney donor? If you were on dialysis, would you accept a kidney from a homosexual donor? This instrument was administered to various groups of the general public and caregivers: high school students (Liceo Classico: 59 students, median age 18 years; Istituto Tecnico: n=108, median age 17); first and fourth year of medical school (n=77, age 19; 46, age 22); continuing medical education (n=44, age 32); third year of nursing school (n=31, age 23); "senior citizen university" (n=51, age 63). RESULTS: Male homosexuality was well accepted for kidney donation (71.6% yes, 9.6% no, 18.8% uncertain/blank). However, the opinions were different among the groups with male students of a technical institute showing discrimination against male homosexuals. In the univariate analysis, opinions differed according to age, gender, and belonging to the health care team. In the multivariate analysis, the latter was the strongest predictor (P<.01). The specific threats for the health are not well known, even among the caregiver population. CONCLUSION: It is difficult to define the role of homosexuality among the so-called social risk behaviors. Negative attitudes existed in some subsets of the population.

Diffuse vascular damage in a transplanted kidney: an indication for nuclear magnetic resonance?

Vascular lesions are an increasing challenge after renal transplantation due to the wider indications for recipients and acceptance criteria for donors. Diagnostic approach and prognostic interpretation are still matter of controversy. The case reported herein may summarize some of the issues in this regard. A 54-year-old woman, on renal replacement therapy since 1974, and a kidney graft recipient from 1975 to 1999, received a second graft in 2001. The donor age was 65 years (cold ischemia 22 hours; two mismatches). The early posttransplant follow-up was characterized by delayed graft function, hypertension, and diabetes. During the initial hypertension workup, renal graft ultrasound (US) Doppler demonstrated increased vascular resistances, stable over time (resistance index 0.74 to 0.77); renal scintiscan displayed homogeneously parenchymoa and angio-magnetic resonance imaging (MRI), an homogeneous parenchymal vascularization. Initial immunosuppression with tacrolimus and steroids was modulated by adding mycophenolate mofetil to taper tacrolimus (to reduce nephrotoxicity and hypertension). Despite this, kidney function slowly deteriorated; serum creatinine reached 3 to 3.5 mg/dL by the second year. After a severe hypertensive crisis with unchanged scintiscan and US doppler examinations, angio-MRI revealed the almost complete disappearance of parenchymal enhancement beyond the lobar arteries. A renal biopsy confirmed the severe vascular damage. The patient was switched to rapamycine and a low-dose of an angiotension converting enzyme (ACE) inhibitor. She did relatively well (serum creatinine 2.2 to 3 mg/dL) for 6 months, when rapid functional impairment forced her to restart hemodialysis. This case, almost paradigmatic of the problems occurring when the rigid vasculature of long-term dialysis patients is matched with "marginal kidneys," suggests that MRI may be a sensible good to define vascular damage in the grafted kidney.

CKD patients and erythropoietin: do we need evidence-based informed consent?

BACKGROUND: Consent to therapy is increasingly requested in the form of ''informed consent''. OBJECTIVE: To validate an evidence-based informed consent form for erythropoietin (EPO) therapy and to evaluate patient opinions about the informed consent approach. METHODS: An evidence-based informed consent form was developed as part of the Evidence-Based-Medicine course at the Medical School of Turin, Italy. It was validated by anonymous questionnaires (0-10 analogical scales and open answers) administered to patients at different stages of CKD (19 pre-ESRD, 26 hemodialysis, 12 transplant patients) attending an outpatient unit of the University of Turin, to 8 nurses, and to 26 medical students. RESULTS: All individuals filled in the questionnaire. Interest in a detailed explanation of the therapy was high (median 9), as was comprehension (median 9), with no differences between patients with regard to disease stage (pre-ESRD vs. RRT) or educational level. Prior knowledge of the therapy was affected by the educational level (p=0.013 for the advantages and p=0.004 for the side effects) and the professional role (patients vs caregivers: p=0.009 for the advantages and p<0.001 for side affects); patient knowledge of the advantages (median 6) tended to increase as the disease progressed (p=0.015). The most common response by patients was that informed consent was necessary for all drugs (35.1%); 73.1% of the caregivers considered it necessary only for severe side effects. The preferred modality of consent was discussion with the caregiver during the clinical controls (42% of all cases). CONCLUSIONS: Patient interest in and comprehension of an informed consent form with a detailed explanation of the therapy was high; the caregiver's opinion was still the most valued teaching tool.

Diabetic patients on dialysis: a changing picture.

Prevalence of diabetic patients on dialysis is often considered a marker of overall acceptance rate for dialysis; however, even when acceptance policy is open, incidence of diabetic patients varies widely. Epidemiological differences of diabetes incidence all over the world partly explain the discrepancies. Incidence of diabetic patients accepted for dialysis (1981 to 82: 6 p.m.p.; 1989 to 90: 11.5 p.m.p.) differs according to age and sex in the setting analyzed (Piedmont, Northern Italian region, about 4,400,000 inhabitants, 20 dialysis centers, open acceptance since the mid-70s, yearly information on 100% of patients, gathered by a Dialysis and Transplantation Registry). Patterns changed remarkably during the 10 years considered (1981 to 90). Incidence was higher in males (10.4 p.m.p. in the period 1981 to 90), with a peak at ages 60 to 69. Incidence remained relatively stable in the younger patients, but increased in the elderly, mainly in males, rising from 6.23 in 1981 to 82 to 12.88 p.m.p. in 1989 to 90 (males, all ages). In conclusion, the demographic characteristics of diabetic patients with ESRD accepted for dialysis is changing. The stability of incidence of younger patients reassures about the open acceptance policy, at least in these ages. The increase in the elderly probably reflects the longer lifespan of diabetic patients in the overall population. The possibility of a hidden preselection must be further assessed. Future provisions of dialysis needs must take into account the trend towards an increase of this high risk, elderly population.

Henoch-Schönlein purpura after 20 years of renal replacement therapy.

While the clinical impact of the impaired immune response, commonly described in chronic dialysis patients, is still a matter of discussion, it is usually considered that immunological diseases tend to become progressively less active after the start of regular renal replacement therapy (RRT). We reported a case of Henoch-Schonlein Purpura in a 51-year-old male, on RRT for 20 years, 8 on dialysis and 12 with renal graft, because of ESRD of unknown origin (chronic glomerulonephritis?). The acute onset of the syndrome, presenting purpuric rash, abdominal discomfort and asymmetric joint pain with edema and local signs of acute inflammation, was followed by several relapses over a 2 years period. This biopsy proven diagnosis offered an explanation for his chronic renal failure; furthermore, we conclude that, possibly because of the usually good correction of uremic immunodepression by efficient dialysis (this patient's Kt/V ranged from 1.1 to 1.3 according to Lowrie's formula), the possibility of immune diseases should be carefully considered even in long long-term RRT patients.

Modelling the "ideal" self care--limited care dialysis center.

Limited care dialysis is an interesting option, which has gained attention in several settings because of the aging of the uremic cohort. The aim of this study was to assess its potential in the Piedmont region in northern Italy, evaluating patients' and care-givers' preferences and testing them in a mathematical model of organisation. The study was conducted in the satellite unit of a university hospital (200-210 dialysis patients), following 35 patients (15 at home, 20 in the center, 10 on daily dialysis). Opinions were collected with a questionnaire and features identified were empirically tested through a simulation model. Most patients (34/35) preferred a small unit, with a stable caring team. Further options were flexibility of dialysis schedule, multiple treatment options, integrated center/home care. These needs could be met by a flexible organization including conventional dialysis (3/week) and daily dialysis (6/week). We employed a simulation model (ARENA software) to calculate the nurses required for each shift and the opening hours and best schedule for the unit. Addition of daily dialysis (2-3 hours) to two conventional 4-5 hour sessions to increased the number of patients followed or "spared" beds, ensuring flexibility. According to patients' best choice (7 dialysis stations), and to the recorded calls, the needs are for two nurses per shift, two shifts per day and six nurses for up to 30 patients in limited care. In conclusion, small centers with flexible schedules can tailor dialysis to patients' needs. A managerial approach is valuable for testing cost/benefit ratios in specific contexts.

Renal transplantation from cadaveric donor after myocardial revascularization: still a matter of concern?

Renal transplantation in patients who have undergone coronary revascularization remains a matter of concern, few experiences have been reported in literature. From January 1997 to March 2003, 23 previously revascularized patients underwent renal transplants from cadaveric donors. We analyzed patient survival and cardiac events in this group of patients (group A) versus a similar population of 38 revascularized patients who were still on dialysis (group B) on the active waiting list (awl). After a similar follow-up (29.30 +/- 21.34 months versus 32.98 +/- 31.33 months; P = .56), survival was 100% for renal transplant patients and 94.74% for dialysis patients, two of whom (5.26%) died from acute myocardial infarction and four (10.52%) were excluded from the waiting list because of cardiac problems. The event-person ratio was 0.51 for group A patients (75% of events clustered within the first 6 months) and 0.71 for group B. The need for therapy with nitrates decreased from 11/23 (47.8%) to 6/23 (26%) after transplant. The ejection fraction remained stable (53.82% +/- 10.4% vs pre-Tx value of 54.8% +/- 9.4%). Renal survival was 100% (sCr = 1.4 +/- 0.4 mg/dL). Although no statistical significance has emerged, there was a general trend in favor of transplanted patients. On the basis of this experience we believe that coronary revascularization per se should no longer be a matter of concern for renal transplantation, which could be superior to dialysis for this type of patient.

Living donor kidney transplant in Italy: is the underutilization justified?

Living donor transplants (LDtx) represent an underutilized resource in Italy. It is, however, a therapeutic option that deserves greater consideration not only due to the increasing gap between the number of uremic patients on waiting lists (6956) and the number (1464) of cadaveric transplants (CADtx), as evidenced in 2002, but also due to the advantages of LDtx over CADtx. The superiority of LDtx include better graft survival, independent of the donor/recipient relationship, less need for dialytic treatment with preemptive transplants and reduced immunogenicity of the graft due to the brain death-related "cytokine storm." Moreover, some emerging procedures namely laparoscopic nephrectomy instead of open surgery and spiral CT instead of renal angiography namely, reduce the physical and socioeconomic burden of the donor. In the light of these considerations, LDtx should be reconsidered in the Italian scenario of kidney transplantation.

Asclepiad's cock: a patient-physician association is a useful tool for educational programs in nephrology, dialysis, and transplantation.

BACKGROUND: The negative impact of the mass media, the lack of information, and the request for in-depth knowledge are the basis for the present need for educational programs on transplantation, brain death, and chronic kidney diseases end-stage renal disease; (ESRD). The aim of the present article was to critically review the activities performed by Il Gallo di Esculapio, a nonprofit association, in the education on the different phases of ESRD. The associates are physicians and patients, and the activities are integrated institutionally. METHODS: This report is a narrative review of the material produced and performed by Il Gallo di Esculapio ONLUS in 1996-2004. RESULTS: The two main activities developed were book writing and an educational program. Eight books for patient education were written on different aspects of dialysis, transplantation, and ESRD. Most were designed as theses of the Medical School. Cooperation with patients was important in all cases and fundamental for the collection of interviews. EDUCATION: A 4-hour educational program on transplantation started in 2000-2001 (1 high school was involved). The checklist originally included only transplantation and organ donation, but progressively gave space also to dialysis, ESRD, and social health care problems. In 2003-2004 the program involved 67 high schools. The association coordinated progressive patient involvement. CONCLUSION: Small, nonprofit patient-physician associations linked with the University allow enrolling resources for educational activities to often-neglected parts of the medical profession.