# The Role of Patient Organisations—Patients’ and Parents’ Views and Experience of Hirschsprung’s Disease

## TL;DR

Patient organizations help Hirschsprung’s disease patients and families manage the condition through support, information, and shared experiences beyond medical care.

## Contribution

Highlights the essential role of patient organizations in providing holistic, lifelong support for Hirschsprung’s disease patients and families.

## Key findings

- Patient organizations offer emotional and informational support at all life stages of patients and families.
- They help improve understanding and management strategies for this rare disease.
- Referral to patient organizations should be part of standard medical advice for Hirschsprung’s disease.

## Abstract

In many countries, patient organisations offer advice and the exchange of experiences to Hirschsprung’s disease patients and their families. Professional treatment by experienced health care providers and the availability of life-long multidisciplinary follow-up care are essential. However, outside the clinic, patients and their families have to manage life on a day-to-day basis at home, which often brings up uncertainties and questions: Parents go through different stages during the diagnosis and treatment of their child, the affected children themselves go through many different stages of development, and even through the course of adulthood, new questions regarding the chronic disease may arise. Patient organisations can support the patients and their families at all stages of life by listening, offering information in an understandable way, connecting people, and sharing others’ experiences. This enables families and patients to develop a better understanding of the rare disease and promotes their management strategies and confidence. The holistic approach of patient organisations aims to complement the medical treatment. Therefore, the referral of all patients and their families to patient organisations should be part of the medical advice in the treatment of Hirschsprung’s disease.