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September 11, 2023

Upcoming: CPPENA Annual Fall Meeting - Patient Power in home EN and PN: Navigating Advocacy and Leading Change

Tuesday, October 31, 2023 (virtual)
11:00am- 1:00pm ET




The 2024 CPPENA Annual Fall Meeting revolves around the central theme of patient advocacy. This conference will highlight insights on how to navigate advocacy to effect change, both on an individual patient level and within the broader community. 

This year’s symposium aims to establish a foundation for our CPPENA members, patients and care takers alike, providing them with the knowledge and skills essential for becoming patient advocates and catalysts of change. Towards the end of the symposium we invite all attendees to participate in an open discussion as an opportunity to exchange experiences and challenges around advocacy. Attendees are encouraged to ask questions to our guest speakers during this time. 

About the Speakers:

Marek Lichota - HPN Patient, Dietitian, President of the Appetite for Life patient association, Kraków, Poland - has been suffering from Crohn’s disease since 2002. Due to complications of this underlying disease in 2008 he experienced massive bowel resections. Since then, he requires home parenteral nutrition and aims to prove that living with artificial nutritional support does not exclude people from living a satisfactory life. Based on his disease and therapy related experiences, he founded an Appetite for Life Association for patients requiring home parenteral and enteral nutrition in Poland. Marek Lichota is a member of numerous scientific, professional and patient organizations which stand for education, raising awareness and patient empowerment in particular disease areas and therapies.  His interests include clinical nutrition, chronic intestinal failure and inflammatory bowel diseases.  He is a co-author of POLSPEN (Polish Society for Parenteral, Enteral Nutrition and Metabolism) and ESPEN (European Society for Parenteral, Enteral Nutrition and Metabolism) guidelines, which refer to Home Parenteral and Enteral Nutrition and Chronic Intestinal Failure. In 2022 he completed a bachelor degree in Human Nutrition and Dietetics. Privately, Marek is a happy husband and the father of two children, who brings a lot of joy and strength to his life.

Carolyn Wheatley is currently the chair PINNT, support and advocacy for people on HAN in the UK. She has worked closely with healthcare professionals, decision and policy makers, product specialists and the NHS to collaborate to bring the users voice to the forefront. She has also worked to seek approval of new medication within the UK to offer people on home parenteral support, who fit the criteria to have the option of intestinal growth factors, following clinical consultation. PINNT offers no medical advice and respects the boundaries within they are able to work and network. She has had intestinal failure for over 45 years and has been on parenteral nutrition for 40 years. Living with pseudo obstruction has been difficult, especially in the early years when she was undiagnosed and experienced some difficult challenges in terms of trying to survive! Being on PN has not stopped her, she loves to travel; she has visited many places within the UK, Europe and has ventured to the USA, Thailand and Australia. She loves musical theatre, meeting people to make memories and takes pleasure in seeing how people on any form of artificial nutrition can also make the most of their lives to use the treatment to enable them to live within the constraints but by moving boundaries without taking any risks

The opinions expressed by the participants at this session reflect personal experiences and are meant for sharing and to stimulate interactive discussions. As such some of these may not reflect the opinions or beliefs of the Canadian Nutrition Society or CPPENA. This information does not replace guidance from your healthcare provider.

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