LIFE

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.

About Intestinal Failure

Intestinal Failure (IF) is a life-threatening condition that impairs the body’s ability to absorb vital nutrients and fluids due to significant loss of gut function. It often results in prolonged hospitalisations and numerous distressing medical procedures, that can have a destructive impact on quality of life [1]

Many patients rely on life-saving home parenteral nutrition (HPN), which is considered the gold-standard of care. However, its availability varies significantly between, and within, countries and IF continues to be under-recognised and underfunded across Europe.

February 1st is now 1F Day!

LIFE initiative launches its second international day on Intestinal Failure (IF) on February 1^st: 1F Day. Supporters can join the conversation on social media using the hashtag #1FDay. Patients can also get involved via their local patient group.

1F Day is focused on highlighting disparities in access to treatment. We’re calling on policymakers and healthcare professionals to support a future where patients receive equitable care, healthcare professionals collaborate efficiently across borders, and policymakers drive change that will save lives.

How you can get involved

We need your help to make 1F Day a success! Here’s how you can support this important initiative:

1. Spread the word: Share information about 1F Day on your social media channels using #1FDay and the templates in the toolkit (see below) provided
2. Support the LIFE Manifesto: Encourage your network to read and share the LIFE Manifesto, our roadmap to achieving equal IF care across Europe by 2030. Use our template social media posts to spread the word, and share with your local Health Minister.
3. Host local activities: Organise events at your hospital or centre, such as:
   • • Invite an expert speaker to talk about IF and the need for standardised care.
     • Invite your local MP or MEP (and local journalists) to attend a live or online Q&A session.
     • Encourage staff to wear blue to mark the day.
     • Sign up to become a 1f Day fan.
     • Download and display the 1F posters on your noticeboards.
     • Create a wall of IF stories.

Resources to support your 1F Day

We’ve prepared a digital toolkit to make taking part easy containing a 1F Day guidance document including key facts and messages about IF and 1F Day, press release, social media templates, infographics and poster for your facility.

[1] Pironi, L. et al. ESPEN guidelines on chronic intestinal failure in adults. Clinical Nutrition. 35(2). 247–307

The LIFE Steering committee

Sponsors

The LIFE initiative is proudly supported by the following sponsors, who had no involvement in the contents of the campaign.