For patients and families
How can ERNICA support me as a patient or family?
Standards of Care
For rare or complex conditions, there are no clinical guidelines or consensus statements available at present. For some diseases, these are available but some may require review and revision.
ERNICA seeks to endorse, develop or existing clinical guidelines and consensus documents to ensure clinical recommendations are made available to clinicians, patients and their families based on research of the highest quality. As part of this dissemination, ERNICA seeks to create tailored versions of guidelines/consensus statements for patients and families.
Click here to find out more.
Patient journeys
A patient journey describes a number of key stages in the patient's life from possible pre-natal diagnosis to adulthood, identifying key issues and relevant good practice at each stage.
ERNICA clinicians and patient representatives within the esophageal diseases working group have been developing a 'patient journey' for esophageal atresia. This project is led by patient representatives from ‘EAT’, the international federation of esophageal atresia support groups.
The project sets out to describe the patient's journey at a number of key stages in the patient’s life from possible pre-natal diagnosis to adulthood, identifying key issues and relevant good practice at each stage.
Animations and E-learning
ERNICA has developed a series of animation videos for patients, parents and families in various languages.
Traveling abroad with intestinal failure
Are you a patient or family member of a child with intestinal failure who is reliant on total parental nutrition (TPN)? Do you avoid traveling abroad in case of not having access to specialist care at times of need?
You're not alone!
The 2019 ERNICA annual meeting featured an insightful presentation by two parents of children with intestinal failure, both of whom are reliant on total parenteral nutrition as a method of feeding. They presented their personal challenges in regards to travelling abroad with their children and voiced their concerns about not having access to specialist, emergency care (if needed) whilst abroad. ERNICA recognises these challenges and has developed an online map tool so that you can easily identify specialist centres across Europe that meet the following criteria:
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Centre has a minimum of 10 (paediatric) patients on long-term home TPV and delivers TPV to these patient
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Centre can place central venous lines for TPV children.
Knowledge of this may help you to prepare for a trip abroad. In 2022 the online map was expanded with information on care for adults. By using the filter on the vacation tool, centers providing for children or adults can be selected.
Templates
A patient's local healthcare provider can make use of the following templates to provide a record of the medical history/any clinical precautions. These can accompany you on your trip abroad in case emergency care is required.
The following TPN checklist can also be used when preparing for your trip abroad.
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TPN travel checklist (PDF)
Access the map tool below
* Centres will be continually added to the map as and when appropriate.
* This tool is for informative purposes only. The purpose is for patients/families/carers to be able to easily identify specialist centres abroad. ERNICA is not responsible for the organisation or provision of care. ERNICA is not an emergency service. ERNICA cannot be contacted to discuss clinical cases outside of the Clinical Patient Management System (CPMS).
Sexual support
Anorectal malformations and Hischsprung's disease
How can an anorectal malformation (anal atresia) or Hirschsprung's disease affect sexuality? What can be different than in others without these conditions? What can you encounter and how can you deal with it? Answers to these and other questions about intimacy, sex, sexuality and sexual development can be found on the ERNICA/eUROGEN sexual support website [In Dutch and English].
This website is designed to support patients with Hirschsprung's disease and anorectal malformations, their parents and healthcare professionals involved in their care.
The original version of this website (in Dutch) was developed by project group 'SO' (Seksuele Ondersteuning anorectale malformatie & ziekte van Hirschsprung) in close collaboration with patients and specialist practitioners in the Netherlands. See research paper by Violet Petits-Steeghs et al. (2020) for more information on the project.
The Dutch website has been translated into English and adapted (where relevant) for an international audience.
Do you want to help us improve this website or give feedback?
ERNICA and eUROGEN are collecting anonymous information from website users to evaluate the use, applicability, expected empowerment effect and experience of this sexual support website tool on healthcare professionals, patients, parents and other relations on an international level. This evaluation aims to identify areas where the website can be improved to ensure it is fit for purpose and meets the needs of users. It may also help to shape new resources or initiatives in the future. Find out more here.