LIFE https://european-nutrition.org/life/
The website has been developed as part of a drive to raise awareness of Intestinal Failure ( IF) starting with the first event that took place on 1st Feb 2025. The Salford IFU are hosting an event in the Mayo Building as part of their collaboration in the campaign.
Advocating for Equal Access to Intestinal Failure Care Across Europe
The Leading Intestinal Failure Equality (LIFE) initiative is dedicated to raising awareness of Intestinal Failure (IF), the challenges faced by individuals living with the condition, and calls to address the significant disparities in care that currently exist across Europe.
The initiative, part of the ONCA campaign, is led by a pan-European expert steering group including patients. LIFE recently published its manifesto calling for early diagnosis, comprehensive care, equitable access to IF treatment and enhanced collaboration through data sharing and partnerships.
PINNT https://pinnt.com/Home.aspx
Association established to help people or carers who are living with an illness which requires treatment by intravenous, enteral or artificial nutrition therapy
Addition:
Patient leaflet “Managing psychological well-being: Top tips for adults living with home parenteral nutrition” can be found at:
https://pinnt.com/News/News/Non-Members/Top-Tips-leaflet.aspx
Mayo Clinic
Website provides information on nutrition and intestinal failure, patient stories, resources for physicians, education and quality and the Mayo Clinic
Cleveland clinic
Website provides information on intestinal failure information, discharge information, indications for intestinal transplant, diagnosis and transplant
https://my.clevelandclinic.org/departments/transplant/programs/intestine
Additions
St Mark's Hospital and Academic Institute https://www.stmarkshospital.nhs.uk/
St Mark’s Academic Institute is the centre of education and research at St Mark's Hospital; the first and only specialist bowel hospital in the UK.
Leaflet for health professionals, “Top Tips for Managing the Psychological Well-being of Adults Requiring Home Parenteral Support (HPS)”: https://www.bapen.org.uk/pdfs/bifa/bifa-top-tips-series-13.pdf
Crohns and Colitis UK - https://www.crohnsandcolitis.org.uk/
“An association that supports people affected by Crohn’s and Colitis, including friends, family, healthcare professionals and employers.”
Ileostomy Association - https://iasupport.org/
“A national support group for people living with an ileostomy or internal pouch, including families, friends and carers”