Children’s kidneys

Dear children, dear parents, dear interested persons, the kidneys have virtually the same function in children as they do in adults. However, there are certain differences and specific aspects that the kidneys have to cope with in childhood. For instance, good kidney function is very important for the body to grow normally.

….when things suddenly turn out differently …..

For affected children suffering from limited kidney function, their parents and their siblings, life will be different from what their healthy schoolmates experience, for example. There is a huge desire for everyday life to be as normal as possible and this normality is sometimes difficult to reconcile with the countless treatments and appointments.

There will be lots of issues and concerns, which can relate to medical matters but also to administrative and financial aspects. Educational issues sometimes arise or there may also be questions about accompanying siblings. We want to help make information quickly and easily available through this site, which is specifically aimed at children with kidney disease and those around them.


The Kidney Foundation does not offer a consultation service or provide medical details. Instead, please obtain this from the doctor who is treating you. A list of child nephrology centres is given below. 

Informations & links

Where can I find a hospital with a child nephrology department?

We have financial worries!

I have a legal issue! How does application for invalidity insurance work?

Q & A (constantly being updated): 

New law as of 14 July 2021: The new Federal Act on the improvement of the compatibility of work and family care, which entered into force on 1 January 2021 and 1 July 2021, regulated the continued payment of wages during short absences from work and the paid 14-week leave to care for severely ill or injured children, expanded the care credits in old age and surviving dependents’ pensions (AHV) and amended the entitlement to the intensive care supplement and the attendance allowance under disability insurance to include children.

See: Federal act
Federal Act on the improvement of the compatibility of work and family care / BBl 2019 8667

See also information links

Q: How do we find out whether our child is insured under disability insurance or health insurance in view of their kidney disease
A: You will usually be informed by the doctor treating your child when an application for invalidity insurance is made. It depends on whether or not the kidney disease is a recognized birth defect under the terms of disability insurance.

Provision regarding birth defects

Q: How does application for invalidity insurance work?
A: Your doctor will usually tell you if you need to apply. You will receive an application form which you must complete and send back. The invalidity insurance scheme will then demand a doctor’s letter and decide whether or not it is a matter of a recognized birth defect. You, as parents, will then be notified directly of their decision by invalidity insurance. The formalities can sometimes take a long time but, as long as there has been no decision from invalidity insurance, treatment will be covered by health insurance.

Q: For how long will invalidity insurance cover the benefits?
A: Until the child has completed their 20th year (i.e. up to one day before their 21st birthday)

What happens to the parents

What happens to the parents, siblings and those around them when a small person gets kidney disease?

What is happening to my sister, my brother? Why is he so poorly? Why can’t she play with me anymore? Why have my parents no time for me anymore? Is my brother/sister in pain?

Around 10 – 20 % of school age children and teenagers are affected by an impairment of their health or a chronic illness. Schools are committed to caring for every child appropriately in their day-to-day school life.

Various services are available, depending on the canton: 

School medical services – Information about care and support in everyday school life

Where can I get psychological support?

Useful links

 Orange = Sprache verfügbar

Brandenberger Hilfsfond: Ziel und Zweck ist die finanzielle Unterstützung von hilfsbedürftigen- oder finanziell in Not geratene Nierenpatienten
Deutschland – Hilfe für nierenkranke Kinder und Jugendliche e.V. – viele Informationen (auf Deutsch)
Elternsofa vernetzt dich mit anderen Eltern! Dir geht es möglicherweise wie vielen Eltern: Der Bedarf an spezifischen Informationen zum Alltag mit deinem Kind mit einer (geistigen) Behinderung ist gross – die Suche nach adäquaten Informationen aufwändig und die Zeit knapp.
Entlastungsdienst: Sind Sie auf der Suche nach Unterstützung in der Betreuung (auf Deutsch)
Inclusion handicap bietet Beratung und Mandatsführung an. Bei Übernahme eines Mandates wird eine einmalige Fallpauschale von Fr 150.00 berechnet
Kinderspitex: Der Verband Kinder-Spitex Schweiz ist ein Zusammenschluss von Kinder-Spitex Organisationen und freiberuflichen Pflegefach¬personen, die in der Pädiatrischen Pflege im spitalexternen Setting tätig sind.
Kinderbetreuungsdienst des Schweizerischen Roten Kreuzes
Orphanet: Diese Seite bietet Neuigkeiten, Veranstaltungen und Dokumente von nationaler Bedeutung für seltene Krankheiten und Arzneimittel für seltene Leiden – Das Portal für seltene Krankheiten und Orphan Drugs
Pädiatrie schweiz ist die professionelle Organisation für alle Kinderärztinnen und Kinderärzte in der Schweiz
Procap: Wir kämpfen im Kleinen wie im Grossen für Menschen mit Behinderungen
Pro Infirmis – führt in der ganzen Schweiz Beratungsstellen und unterstützt Menschen mit Behinderungen und ihre Angehörigen
Rechtsberatungsstelle UP für Unfallopfer und Patienten. Wir kennen Ihre Rechte. Eine Beratung von 45 Minuten kostet CHF 100.00
Schulärztliche Dienste – Information zur Betreuung in Schulalltag
Schweizerische Arbeitsgruppe für Pädiatrische Nephrologie (SAPN)
Schweizerische Pädiatrische Nierenregister (SPNR)
Schweizer Palliativstiftung: unterstützt Familien mit schwerstkranken Kindern
Stiftung Pro Aegrotis – Die Stiftung zur Unterstützung von bedürftigen Kranken
AIRG-Suisse: Association pour l’information et la Recherche sur les maladies rénales génétiques
Association pour la Sclérose Tubéreuse de Bourneville
Association Intervalle : Maison INTERVALLE – une maison pour les parents d’enfants

Links auf Webseiten Dritter liegt ausserhalb des Verantwortungsbereichs der SNS. Der Zugriff und die Nutzung solcher Webseiten erfolgen auf eigene Gefahr des Nutzers oder der Nutzerin. Die SNS erklären ausdrücklich, dass sie keinerlei Einfluss auf die Gestaltung, den Inhalt und die Angebote der verknüpften Seiten haben. Informationen und Dienstleistungen von verknüpften Webseiten liegen vollumfänglich in der Verantwortung des jeweiligen Dritten. Es wird jegliche Verantwortung für solche Webseiten abgelehnt.

 Arancio = lingua disponibile

Brandenberger Hilfsfond: (Fondo di soccorso): questo fondo ha lo scopo di fornire un sostegno finanziario ai pazienti nefropatici bisognosi di aiuto o in difficoltà finanziarie
Deutschland – Hilfe für nierenkranke Kinder und Jugendliche e.V. – Associazione di aiuto per bambini e adolescenti con malattie renali – molte informazioni (in tedesco)
Elternsofa ti mette in contatto con altri genitori!Probabilmente ti senti come molti altri genitori: la necessità di informazioni specifiche sulla vita quotidiana con un figlio disabile (mentale) è grande – la ricerca di informazioni adeguate è impegnativa e il tempo a disposizione è poco.
Entlastungsdienst: (servizio di sollievo): se siete alla ricerca di supporto all’assistenza (in tedesco)
Inclusion handicap offre consulenza ed esecuzione del mandato. In caso di assunzione di un mandato viene applicata una tariffa forfettaria una tantum di CHF 150.00
Kinderspitex: L’associazione Kinderspitex Svizzera raggruppa le organizzazioni di spitex pediatrici e di personale infermieristico libero professionista operante nell’assistenza pediatrica in ambito extra-ospedaliero
Servizio di assistenza all’infanzia della Croce Rossa Svizzera
Orphanet: questo sito fornisce informazioni relative a novità, eventi e documenti di importanza nazionale per le malattie rare e i farmaci orfani – Il portale delle malattie rare e dei farmaci orfani
Pädiatrie schweiz è l’organizzazione professionale di tutti i medici pediatri della Svizzera
Procap: ci battiamo per le persone disabili piccole e grandi.
Pro Infirmis – gestisce centri di consulenza su tutto il territorio svizzero e assiste le persone affette da disabilità e i loro familiari
Ricerca psichiatrica
Rechtsberatungsstelle UP Centro di consulenza legale per vittime di incidenti e pazienti Conosciamo i vostri diritti. Una consulenza di 45 minuti costa CHF 100.00
Servizi medici scolastici – informazioni sull’assistenza nella quotidianità scolastica
Gruppo di Lavoro Svizzero per la Nefrologia Pediatrica (SAPN)
Registro Pediatrico Svizzero dei Reni (RPSR)
Schweizer Palliativstiftung (Fondazione svizzera di cure palliative): supporta le famiglie con bambini affetti da malattie gravi
Fondazione Pro Aegrotis – Fondazione di sostegno ai malati bisognosi
AIRG-Suisse: Association pour l’information et la Recherche sur les maladies rénales génétiques
Association pour la Sclérose Tubéreuse de Bourneville
Association Intervalle : Maison INTERVALLE – une maison pour les parents d’enfants hospitalisés

I link a siti web di terzi esulano dalla sfera di responsabilità della FSR. L’accesso e l’uso di tali siti web avviene a rischio esclusivo dell’utente. Le FSR dichiarano espressamente di non avere alcun influsso su design, contenuto e offerte dei siti web connessi. Le informazioni e i servizi offerti dai siti web collegati sono di esclusiva responsabilità dei rispettivi operatori terzi. Si declina qualsiasi responsabilità in merito a tali siti web.

 Orange = Langue disponible

Fonds d’Entraide Brandenberger: Ce fonds a pour but d’apporter un soutien financier aux patients insuffisants rénaux dans le besoin ou dans une situation financière précaire
Allemagne – Hilfe für nierenkranke Kinder und Jugendliche e.V. – site comportant de nombreuses informations (en allemand)
Elternsofa Parents-parrains met les parents en relation avec d’autres parents! Tu es probablement dans la même situation que de nombreux autres parents: le besoin d’informations spécifiques concernant le quotidien avec ton enfant souffrant d’un handicap (mental) est grand, la recherche d’informations pertinentes souvent laborieuse et le temps est compté..
Service d’assistance pour vous délester: vous cherchez de l’aide pour la prise en charge au quotidien (en allemand)
Inclusion handicap propose des conseils et une prise en charge de mandat. Lors de la constitution d’un dossier (à compter d’une heure de travail), un forfait unique de Fr 150.00 est facturé par cas.
Kinderspitex: l’Association Soins pédiatriques à domicile Suisse est une association d’organisations de Soins pédiatriques à domicile et d’infirmières et d’infirmiers indépendants actifs dans le domaine des soins pédiatriques en milieu extrahospitalier
Service de garde d’enfants de la Croix-Rouge Suisse
Orphanet: Ce site propose des nouveautés, des manifestations et des documents d’importance nationale pour les maladies rares et les médicaments pour traiter les maladies orphelines – Le portail des maladies rares et des médicaments orphelins
Pédiatrie suisse est l’organisation professionnelle de tous les pédiatres en Suisse
Procap: Nous nous battons à petite et grande échelle pour les personnes avec handicap
Pro Infirmis – propose des services de consultation et soutient les personnes porteuses de handicap ainsi que leurs proches partout en Suisse
Recherche de psychiatre
Bureau de consultation juridique (Rechtsberatung UP) pour les victimes d’accidents et les malades. Nous connaissons vos droits. Un conseil de 45 minutes coûte CHF 100
Service de santé scolaire – information sur le suivi à l’école au quotidien
Groupe de travail de la Société Suisse de Néphrologie Pédiatrique (SAPN)
Registre Pédiatrique Suisse du Rein (RPSR)
Schweizer Palliativstiftung  (Fondation suisse de soins palliatifs): vient en aide aux familles dont les enfants sont gravement malades
Fondation Pro Aegrotis –  la fondation pour le soutien des malades
AIRG-Suisse: Association pour l’information et la Recherche sur les maladies rénales génétiques
Association pour la Sclérose Tubéreuse de Bourneville
Association Intervalle : Maison INTERVALLE – une maison pour les parents d’enfants

Les liens renvoyant vers les sites web de tiers ne sont pas de la responsabilité de la Fondation suisse du rein. L’accès à ces sites et leur utilisation se font aux risques et périls de l’utilisateur. La Fondation suisse du rein déclare expressément qu’elle n’a aucune influence sur l’organisation, le contenu ni les offres des sites mis en lien. Les informations et les services des sites web mis en lien sont sous l’entière responsabilité de la tierce partie concernée. La Fondation suisse du rein rejette toute responsabilité concernant ce type de sites.

 Orange = Language available

Brandenberger Hilfsfond [assistance fund]: Its purpose is financial support for kidney patients in need of assistance or in financial difficulties.
Germany – Hilfe für nierenkranke Kinder und Jugendliche e.V. [aid for children and adolescents with kidney disease] – lots of information (in German)
Elternsofa will connect you with other parents! You will probably be feeling like a lot of parents: you have a huge need for specific information about day-to-day life with your child with a (mental) disability – but searching for appropriate information is time-consuming and your time is tight.
Respite service: If you are looking for support with care
Inclusion handicap offers advice and legal representation. A one-off flat rate of CHF 150.00 is calculated for taking on a case.
Kinderspitex -Spitex for children: The association of Swiss Spitex services for children is an amalgamation of Spitex for children organisations and freelance nursing staff who work in paediatric care in the Spitex outpatient setting.
Childcare service of the Swiss Red Cross
Orphanet: This website offers news, events and documents of national significance for rare diseases and drugs for rare complaints. The portal for rare diseases and orphan drugs
Pädiatrie schweiz –Swiss Paediatrics is the professional organisation for all paediatricians in Switzerland
Procap: We fight for people with disabilities on small as well as large issues.
Pro Infirmis – runs advisory services throughout Switzerland and supports people with disabilities and their families.
Psychiatrist Search
Rechtsberatungsstellelegal aid office UP for accident victims and patients. We know your rights. A 45-minute consultation costs CHF 100.00.
School Medical Service – information about care in everyday school life
Swiss Association for Paediatric Nephrology (SAPN)
Swiss Paediatric Renal Register (SPRR)
Pro Pallium Stiftung – Swiss Palliative Foundation: supports families with the most severely ill children
Foundation Pro Aegrotis – The foundation for the support of patients in need
AIRG-Suisse: Association for information and research into genetic kidney diseases (French only)
Association for Tuberous Sclerosis Complex (French only)
Association Intervalle: The INTERVALLE home – a house where parents of hospitalised children can stay

Links to third-party websites lies outside the area of responsibility of the SKF. Access to and use of such websites is at the user’s own risk. The SKF expressly declares that it has no influence on the design, content and offers appearing on the linked websites. Information and services provided on the linked websites are the full responsibility of the third party concerned. No liability is accepted for such websites.

Transition – Crossover

When children grow up …… have you already wondered about the crossover from paediatric nephrology to adult nephrology? Your attending physicians* can discuss the subject with you and provide you with information.


Geschwister chronisch kranker Kinder stärken. Das Programm “Stark und Fit mit Piet”.
Silke Seiffert.

ISBN:  978-3-8382-1058-2

Geschwister von chronisch kranken Kindern und Jugendlichen: Erleben und Bewältigungshandeln.
Christiane Knecht.

ISBN: 978-3-658-20995-7

Swiss camp for children with kidney disease

The first holiday camp for children with kidney disease and their siblings took place in Switzerland more than 30 years ago. The camp has always been organised by the Department of Nephrology at Zurich Children’s Hospital. This summer camp gives children and young people suffering from kidney disease the opportunity to get together, whilst their families get a break from caring for them for a week.

«Finding pleasure in the little things
helps you to focus on the positive

Sabine Herzig, Member of the Foundation Board