ATLAS Launch: What more can we do to support chronic intestinal failure patients? A discussion on rare diseases, European Reference Networks, EU health policy
MEP Cristian Buşoi (EPP, Romania) and the Parliament Magazine are hosting the launch of the ATLAS Programme, aimed to improve standards of care for chronic intestinal failure (chronic IF), on Wednesday, 28 March from 12:30 to 14:30 at the European Parliament Member’s Salon.
The ATLAS Programme is led by a steering group comprised of experts in chronic IF including representation from patients, physicians and policymakers. The group is committed to ensuring that chronic IF care of a high standard is a priority in European healthcare systems. The ATLAS programme, of which this event is a part, was initiated and is facilitated and funded by Shire International GmbH.
The ATLAS launch event, will be a key milestone for the chronic IF community. Drawing upon expert speakers from across the patient journey, the event will introduce policymakers and other stakeholders to the issues faced people with chronic IF and pioneer the course of chronic IF care across Europe.
Chronic IF, a rare organ failure, affects between 5 and 20 individuals per million in Europe1. Whilst rare diseases have increasingly been the focus of research and action, chronic IF remains a neglected area of care, with significant inequalities in the management and outcomes of the condition across the European Union.
Watch the video below to see how Hayley is living with intestinal failure.
Europe’s leading chronic IF physicians and patients decided to address these challenges by creating the ATLAS Programme, calling for urgent action at the EU level. The launch event will feature expert speakers from across the patient journey, including patients, leading gastrointestinal healthcare professionals, rare disease experts and EU policymakers. The organisers will present a policy paper setting out challenges and solutions to combatting chronic IF and present data highlighting inequalities of care for the disease across the EU.
For further information and to register your interest, please contact the events team: firstname.lastname@example.org | 0044 207 593 5672
The ATLAS programme, of which this event is a part, was initiated and is facilitated and funded by Shire International GmbH.
1Pironi, L. et al. ESPEN guidelines on chronic intestinal failure in adults. Clin. Nutr. 35, 247–307 (2016).
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